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EAT => Bottle Feeding => FAQ's - Frequently Asked Questions & Related Information - Bottle => Topic started by: rooby-rooby-roo on May 31, 2005, 22:14:59 pm
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This was originally posted by Luke-n-Me, but we seem to have lost the original thread :( . I know if anyone has any questions about this then Nancy (Luke-n-Me) is more than happy to be PM'ed with questions, or just post a reply here and she'll post back.
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I have read many posts regarding babies who are difficult to feed. Many are contributing this to colic, GER or formula intolerance. I just want to let you know of another possibility that is little-known. A swallowing disorder called DYSPHAGIA-something that can occur even in "typical"children.
My son is now 14 mos., but at about 9 weeks of age, he started to scream when presented with the bottle and refuse to take his bottle. I was lucky to get a couple of oz. in him. I went to the dr. week after week trying to figure out what was wrong. He did have reflux (which nearly all infants have) and at first it was contributed to the reflux. But after a trial of zantac with no improvement, I went back to the dr. Our next step was to try switching formulas(intolerance?), we tried soy-no help; then onto nutramigen-again no help. He was starting to slow down in weight gain, so then we thickened up his formula with cereal, it helped a minimal amount, but because we had to cross cut the nipples and make the hole larger, it was just creating the same problem. We also had a barium swallow to look for reflux-nothing significant was found. Finally, Luke lost a few oz. in weight and I was referred to a gastroenterologist at a Children's Hospital a few hours away. Nearly before I walked in the door, he knew what the problem. Here were the questions that he asked me:
1) Does he eat better when he's sleepy?
2) How long does it take to feed him?
3) Does he scream and when he sees the bottle/before he starts to feed?
4) Does he seem fussy while he eats vs. after he eats.
5) Is he congested or had any other respiratory problems.
My answers were:
1) He definitely eats better when he's sleepy
2) It takes at least 45 minutes to feed him
3) He does fuss/scream when he sees the bottle/breast
4) He is only fussy when he eats. As soon as the bottle is taken away, he's fine.
5) He's been chronically nasally congested for weeks.
**watch for coughing/choking and lots of gagging during feeds as well.
These are all signs/symptoms of dysphagia. 1)They eat better when they're sleepy because they aren't as aware of the liquid entering their airway;2) It takes forever to feed them because they are screaming and fussing trying to protect their airway; 3) They learn that the bottle/breast is something to be afraid of; 4) They fuss when they eat due to the liquid entering their airways (aspiration), if it's reflux, then fuss after feeding (drinking soothes reflux, it's after eating when they are burping up the formula/breast milk that the pain begins); 5) Anytime foreign particles enter the airway it can lead to upper respiratory issues.
He immediately told me that he was going to refer me to a pediatric speech therapist for a modified barium swallow (MBS) (x-ray of swallow function). I was immediately shocked because I AM a pediatric speech therapist and I had never heard of this-a "typical" child having a swallowing disorder. It's something that many medical professionals are unaware of, including pediatricians and obviously even speech therapist's who deal with swallowing disorders every day!
Sure enough, the MBS was completed and he instantly aspirated the liquid. I cried of course when I realized that all along we could have just had this study completed and gotten on with life. At this point he had been struggling to eat for 2 months!
THe therapist used some thickeners to thicken his liquid to a nectar consistency and immediately, he latched onto his bottle and started taking it with no problems. We had to thicken his liquid from then on (and still do). He is getting better, we did another MBS when he was 10 mos. and the liquid still got very near the airway, thus we still thicken. He will have another MBS in a few months and we will continue them until he no longer needs the thickener.
When we first started to thickener, it took him about a week to feel comfortable taking the bottle and knowing that it was safe for him to do so-his airway was no longer being compromised. He now drinks from a cup with thickened liquids and does great-no sippy cups though. He will eventually outgrow this and the way that he will outgrow it is by learning to compensate appropriately-he will learn to gage his drinking so that he can handle the liquid without it going into his airway. There is no therapy, it's purely a timing problem with the sucking/swallowing. Thickening helps.
If this sounds like your infant, talk to your dr. about it and request a prescription for a MBS. Be sure to find a speech pathologist who is used to and does MBS's for pediatrics on a regular basis-they are very different from adult studies.
Do not try thickening without first having a MBS as each child may need a different amount of thickening (honey or pudding thick, etc). If this goes on undetected it can lead to oral aversions, picky eating and sometimes refusal to eat. It can also lead to non-stop respiratory issues including congestion, ear infections, bronchitis and pneumonia.
I know how frustrating it is to feed a fussy eater and how desperate you can get to get them to eat. I decided to post a sticky because I've been replying and seeing so many women who are describing babies with this problem that I can't keep up with writing to them. I could continue, but instead if you have any questions, please post a message or a private message and I will get back with you ASAP.
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Nancy
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I have a DS 4 months old just started to wean him today, has gone from 8.5IB oz when born to 13IB then back down to 11IB now on feeding tube and back up to 14IB.
He has been diagnonesed with MSPI not allergy just intoolerence & GERD, he was put on necoate and feeding tubes 2 weeks ago as he point blank refuses to take the bottle, I have noticed this post a couple of times and all the symptoms are my DS, question would the aspiration show in his lungs as the doc have done an XRAY scan and no milk etc shows up, (Not sure it would in a straight forward xray but just out of interest) ?
would the tube bypass the issue as he is getting 6 ounces ??
But he still fusses during the winding part and feeding (REALLY REALLY BAD) then he chokes/gags and brings a hand full of mucus up sometimes in 15 minutes sometimes 1/2 hours later depending on when the wind comes up ??????
How would baby rice affect the issue as it's quite thick ??
I am going to see the doc again next week and would like to present him with some questions
Thanks for your help and the support of knowing someone else knows exactly how it feels when your baby refuses to feed :cry:
X
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Yikes! Sounds like you have really been through it! I'm glad your DS is gaining weight though, that is what's important at this point, but you definitely want to make your way back to oral feeds as soon as possible. As many problems as your having I would definitely track down a pediatric speech therapist (not sure where you're from, but hopefully that won't be difficult for you) and get some help from them. Ideally, you would find a PEDIATRIC speech therapist who has experience doing modifieds, if not, at least one who has experience treating children with feeding/swallowing issues. I think you really need to demand this from your doc as something you want to look into, I would be very surprised if this isn't another part of your DS's problems. If your problem hadn't gotten this far (and if you are going to have trouble finding a ped. ST in your area), I would have recommended that you started thickening long ago in attempt to avoid getting to where you are today; however, you have to start somewhere so try talking to your doc and finding a ST. Let me try to answer your questions:
would the aspiration show in his lungs as the doc have done an XRAY scan and no milk etc shows up, (Not sure it would in a straight forward xray but just out of interest) ?
The aspiration may show in his lungs, but not necessarily, some babies merely show penetration of the liquid into the vocal folds/airway and it never directly goes into the lungs it just "penetrates" the airway and makes them choke and gag. Even with aspiration though, it doesn't guarantee that something will show. The reason that I say this is because my son did directly aspirate, but somehow, his lungs were always clear. However, the problem was clearly still there. The best way to find out is to have a modified barium swallow.
would the tube bypass the issue as he is getting 6 ounces ??
I'm not sure I'm answering this correctly, but I'll give it a try. What type of feeding tube is it? An NG, NJ, gastrostomy/PEG? Really either way the tube should be going directly to your sons stomach and "bypassing" the need to swallow; therefore bypassing any possibility that he may have problems getting it past his airway. Does that help? Let me know if you were asking something different.......
But he still fusses during the winding part and feeding (REALLY REALLY BAD) then he chokes/gags and brings a hand full of mucus up sometimes in 15 minutes sometimes 1/2 hours later depending on when the wind comes up ??????
He could still have GERD with the dysphagia, or he could be getting too much through the feeding tube and he can't tolerate the amount or the rate of the feed........I'm not certain, but GERD and dysphagia can definitely coincide and often do.
How would baby rice affect the issue as it's quite thick ?? This is another question I'm not sure about........are you giving him rice orally? Or are you talking about using it as a thickening agent or is he getting it through the tube? I really don't recommend it as a thickening agent for bottle feedings, but if you just mean giving it to him off of a spoon, it should be fine as long as it's thick enough that he can handle it without signs of distress.
You definitely still need to be doing things to stimulate him orally though, especially if he's been fighting the bottle for a few months. Get a nuk brush and and finger brush. Let him experiement with the nuk and every day make sure that you use both the nuk and the finger brush to massage his gums, tongue, palate and cheeks.
Several months ago I also posted a link to some research articles that may be helpful, if not for you, definitely present them to your doctor. Let me see if I can find them and IF you need them, present them to him/her if you're having trouble getting your point across.
I hope this helps, let me know if you have more questions. Let me know how his progress is going. It will get better........is he showing any other signs of delays in milestones?
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I just wanted to add this for those of you who think you may be encountering dysphagia, but the doctors think you're crazy. I have a research article and I found the "abstract" online. It also lists about 150 other related articles. The article I have is "Swallowing Dysfunction in Children Less than 1 year of age", there is another abstract directly below it that is pretty decent and the author is Vasquez. These abstracts hopefully won't be too complicated for you to understand, but you could at least present them to your doctor and/or speech therapist. They should understand them and maybe they could find the entire article if they haven't ever heard of this before. If you do some research and have some actual facts to back you up, they certainly should listen to you!!
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Display&dopt=pubmed_pubmed&from_uid=11436889
An article I recently got A LOT of info from was from Sheikh, et al.- I used a lot of the info for info I'm getting read to send out to doctors. Hope this helps. I was able to get the whole article for the Sheikh, et al, article (hope that makes sense). Good luck!
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Nancy, thanks for the information on dysphasia. It sounds almost like what I"m going through with my son. Only I haven't noticed any congestion with my ds. He uses a pacifer regularly, so I'm assuming that congestion might make using a pacifier difficult ? He's 6.5 months right now. I'm curious if this is a problem that can come and go from month to month?
My ds was a great eater when we first brought him home. (He did spend a week in the NICU, btw, for Hyaline membrane disease.) But since then he's had several episodes where he cries, fusses, and sputters when I offer the bottle. Up until about 3 weeks ago, my ds was doing fine. I started him on solids since he was fussing with the formula, and he seems to be doing okay with the solids. I know his intake of formula is supposed to decrease when he starts solids. But some days he can go 4 to 5 hours in between feedings, and he'll still put up a fight after 5 hours. Even when I can hear his stomach grumbling.
Karen
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Karen,
Maybe it's something that you want to look into. My DS would do the same thing, he could go for hours without acting hungry. I'm currently finding that my 9 week old DD has the same issue. It's a little different because she's breastfed, so she does a little better from the breast because it's more controlled, but she still bobs on and off a lot, but she outright refused the bottle until I finally broke down and tried the thickener last week and lo and behold, she's starting to take it better. She doesn't get congested either, your DS may not show all of the signs of dysphagia, but that doesn't mean he doesn't have it. Hopefully, you can get some answers, let me know if I can help!
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Hi Nancy-
Thank you for all of your useful info regarding this subject. I finally went to the GI dept. at the local children's hospital and I saw the nurse practitioner there. I asked her about the modified barium swallow and she said that my DD is too young because they have to swallow different textures. Is this true?(She is 3 months) The Occupational Therapist says that we definitely need a test before we can change her treatments.
She is taking a bottle pretty well now, (she will eat 2-4 oz at a time) but when it comes to nursing she will only eat an ounce or two and start screaming. Do you think this is the end of nursing for me? It makes me really sad- I don't have much milk left.
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Only have a second just wanted to say my dd had a barium swallow when she was less than 2 months old...
Sharon
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It is totally ridiculous that she would say they don't do modifieds that young. In an adult they are "supposed" to swallow hard solids, soft solids, pureeds, then honey and nectar and regular liquids, but they only do the textures that they can, you don't HAVE to do them all, those are just the textures that a typical adult would eat. For babies, they just watch them with the different liquids to ensure they are swallowing efficiently-they only look at liquids because, well........that's all a baby takes. Luke's modified was done at 3 mos and my little girl is having one done on Thursday and she's only 2 mos. I've seen them done on babies as young as a few days old.
As for the nursing thing, unfortunately, I can't tell you for certain that she will continue to nurse. I am nursing my daughter this time and am really hoping that this won't happen to me, but in the end, I think what may happen is that as she realizes that she can handle the thickened liquids from the bottle better, she may wean herself from me and go to bottles only. Have you pumped at all? I pump every morning (and I make tons of milk) so I have a stock pile in the fridge that will extend her breastmilk intake a little longer. You could at least try to pump as long as you can if she completely weans from you and give whatever you get from pumping to her and give the rest in formula. Even though I hate the thoughts of my DD weaning from me, I want eating to be a positive, pleasurable experience for her as it is supposed to be, so if she eventually needs to be bottle fed only, then that's what I will have to do. Nurse as long as you can though, that's my plan. One thing about nursing is that it is more controlled than bottle feeding where the milk just spills out of the nipple, but if she becomes more comfy with the bottle, she's just telling you that is the way she feels most comfortable/safe eating. Remember that the problem she is having is that the liquid is entering her airway-you know your reaction when something gets into your airway, it's scary. These are just the things I tell myself to put my mind at ease that I may not be able to nurse as long as I had planned. Let me know if you need anything else, but you can absolutely have a modified-at any age!
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My 8 week old dd, seems to have all the symptoms of Dysphagia, she eats very well when sleepy and takes the first 3 oz quite well, after a burp (we burp during feeds), when placed back in the feeding position and fully awake, she then really fights against being fed by the bottle. Once we soothe her and relax her (near sleep mode) she then feeds well again. Feeds take around 1 hr long for 6 ounces.
She burps well after and does not spit up after, which is why we do not think it is reflux
My questions are:
1 This does not happen every feed but 3/4 out of 5 feeds are a struggle, should this affect every feed?
2 Does this have any other affects? she only likes sleeping in a vertical position (70-80 degree angle) on her chest :( and struggles to sleep otherwise.
3 Anything else we can do to rule out that this is not reflux? (we intend to go to the doctor tomorrow to ask for MBS
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Rap,
My son didn't struggle for every feed and neither does my daughter. The more relaxed/sleepy they were, the better they did. Really the only way to rule out dysphagia is to have a modified barium swallow. Both of my lo's did/do have reflux, but if you have the modified done ( hopefully by someone who does them correctly) you should see exactly what' going on.
As for the sleeping, my son was a very fitful sleeper until we got his feeding issues figured out, not sure that they are totally related things, but it could be! Hope you are able to get some help!
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Thanks Nancy. I don't have very much confidence in that nurse practitioner, so I made my appt. with a new one. I asked her to talk to the doc and the doctor confirmed that yes, my dd can do the swallow study. I am so frustrated with having to be so aggressive with my child's health. I don't get what the doc's are there for. I called to schedule the modified barium swallow and she told me they are going to have to schedule it about a month out.....
As for nursing, my milk supply is pretty low. I have been able to give her my milk for three feedings/day and supplement with formula for 5 feedings. I am sad that she doesn't want to nurse anymore, but am relieved that she is willing to take a bottle now.
Thanks for listening girls!
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Well, I'm definitely glad that you were able to schedule a modified, but it's really unfortunate that it's going to take so long! Hang in there in the meantime!
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Hi, my 4.5mo dd also has similar symptoms... juz to check, how long do i hv to monitor her b4 i go to a PD to ask for such checks? I'm fr S'pore, not sure if we hv speech pediatrics here.
~mary
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If your lo is 4.5 mos, you've monitored long enough. I would try to start the process now. Let me know if you have more questions!
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Hi Nancy
Thank you for your very informative post. I'm going to investigate this further. the dr's were worried that my ds may have had pyloric stenosis,but that has since been discarded, so now they say he has reflux. He as many of the things you mentioned but not all of them, so I'm not sure if this is what it is or not. But something to look into for sure. He is currently on losec, and was just weened off domperidone.
but has lots of choking issues, is currently drinking 6oz bottle sometimes of half EBM and half nutremgien formula. As they thought he may have an allergy as well, but after reading your post, I wonder....thanks again
Holly - Mom of Brady - Our Touchy/Spirited/Textbook Little Boy - Born March 20 2005
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Holly,
Hopefully you'll find an answer to the problem-feeding issues are so frustrating. I thought my dd was having the same issues as ds and it turns out that it was nipple confusion after all. My final try was the Haberman feeder and it worked like a charm for her. It's crazy that I had 2 kids who both had feeding issues, though the issues were very different. Anyway, enough about my issue.......let me know if you have any questions about dysphagia and good luck!!
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Rap, your situation sounds exactly like ours! our doc put us on zantac to see if it's reflux, but we made an appt w/ a specialist in case this doesn't work. my lo is the same... not every feed, takes 3 oz from bottle or 5-10 min from breast and then refuses more until very sleepy. anyone have any suggestions?? what thickener do they use?
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The best thickener is simply thick, which you can find at simplythick.com. You canalso buy a powdered thickener at any drugstore (ask the phamacist). They work, but if you don't use the liquid quickly, it will become extremely thick. Let me know if you have more questions!
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I have been having problems feeding my 15week old ds and have just been reading about the dysphagia. I have been asking my health visitor for a few weeks now and she just says that he is putting on weight so its fine. He was born at 3lb 14oz (1week early, induced as placenta wasnt working good enough) and now weighs 10lb 9oz and is doing well but cant afford to loose any weight. I have been reading the above posts and thought that this could be what is wrong with my ds. Can you tell me:
1- How common is this problem and how many people (GP etc) know about this?
2- Is this to do with breast or bottle fed babies or both?
3- Is it too early at 15weeks to be mentioned to a doctor or ped? We have a ped appointment to do a check up on him, is it worth mentioning it then or wait a while longer to see if he grows out of it?
4- Do you know what to thicken the milk with, what teats should you use and where i can buy it cause i live in England.
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Hello! Hopefully I can help you a little bit! To answer your questions:
- How common is this problem and how many people (GP etc) know about this?
I think it is more common that people realize, but quite honestly very few GP's/Pediatricians know about it.
[i]2- Is this to do with breast or bottle fed babies or both? [/i]
It has nothing to do with breast or bottle feeding, it just has to do with the fact that the babies suck/swallow reflex not being timed right. It affects both breast and bottle fed babies!
3- Is it too early at 15weeks to be mentioned to a doctor or ped? We have a ped appointment to do a check up on him, is it worth mentioning it then or wait a while longer to see if he grows out of it?
Your lo may grow out of it, but at 15 weeks it's definitely not too soon to bring it up. My son showed signs starting at 6 weeks and was finally officially diagnosed at 12/13 weeks. My son was 2 before he outgrew it!
[i]4- Do you know what to thicken the milk with, what teats should you use and where i can buy it cause i live in England.[/i]
You can thicken the milk with either powder or gel liquid thickeners. Simply Thick is by far superior and if it's not available in a health supply store, you may be able to order from simplythick.com-that's how I always got it for my son. You can get the powdered thickener at any pharmacy (at least in the states), the problem with it is that you can't make bottle up ahead of time because the longer the liquid sits with the powdered thickener, the thicker it gets until it becomes pudding-like.
I hope things get a little easier for you and you can get some answers. Let me know if you have more questions!
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Thanx for the relpy, I cant remember if i read it here or somewhere else, but can this affect development milestones?
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Dysphagia itself does not cause developmental delays. It can be part of the problem for children with developmental delays, but the reason it goes undiagnosed so often in "typical" children is because physicians often only think that it coincides with other delays. Unfortunately, if affects typical children too! Does this answer your question?
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Will the condition cause problems on every feed as he feeds ok sometimes. By "typical" children do you mean "normal" ie text book.Also with this do babie tend not to eat as much as they should, It takes us about an hour to get between 4-6oz in him, and he quiet happy then and doent ask for more till about 4 hours later.
Nicola
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Will the condition cause problems on every feed as he feeds ok sometimes. By "typical" children do you mean "normal" ie text book. Also with this do babie tend not to eat as much as they should, It takes us about an hour to get between 4-6oz in him, and he quiet happy then and doent ask for more till about 4 hours later.
Nicola
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HELP PLEASE
My dd is now 9 months old and from the day she was born we have had really bad feeding problems.
We have seen the pead and he didnt seem to know anything till these boards helped me think of reflux which he gave us meds for but this never helped.
The only way I have managed to keep her feeding and to maintain her weight JUST is to DREAM FEED her EVERY FEED. All her bottles are given when shes asleep. If you try to feed her when awake she screams,fights, thrashes about etc she has even started to gag at the sight of a bottle the past few days. Her solid eating is maybe just a small jar aday and this has to be smooth with no lumps. Milk I can just about get her to take 16 - 20 0z in 24 hrs depending on her amount of sleep.
We were then sent to see the dietition who put her on peadiasure to give her more calories.
we then saw speech and language etc who said no problems apart from a huge dislike to drinking !!!! :-X
After months of all this and me force feeding , dream feeding the pead says nothing more can be done! He has done no tests etc NOTHING
After reading the sticky on this Im wondering if Dysphagia is the cause.
Any ideas ?? Some one please help as we cant even leave the house incase we miss her sleeping and the chance to get fluids into her. She will not drink anything , no water , juice etc etc only when shes sleeping ???
Karen
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Karen,
{{{HUGS}}} to you as I totally hear and understand your frustration. I'm really sorry that you haven't gotten any answers yet. What made the speech path basically blow you off? If there is a feeding problem, he/she should be helping you with it because even if it isn't dysphagia, there's definitely a oral sensory problem as you describe her being intolerant of any chunks in her food. Did you have a modified barium swallow completed or did the speech path even do an observation of her eating? Did he/she have any experience in dysphagia in peds? Sorry to bombard you with questions as I know that your looking for answers; I just need a little more info first. Since I can't see your lo myself, it's really difficult to say what the problem is, but it really seems like your lo may be struggling with swallowing issues that have now grown into sensory issues.
Is there another facility where you can go to have her seen by a speech pathologist; or maybe ask and see if occupational therapists are the the who deals with dysphagia where your from.
I'll be looking for your response and hope that I can help guide you through this. You know, if your really that distraught over this, I would go ahead and try some thickener with your lo for now. You can buy the powder type at any pharmacy; it's not as good as simply thick but it's very inexpensive and can at least give you an idea. Because she's so old now though it's going to take EXTRA time for her to get used to taking the bottle and knowing it's safe, as she's so used to fighting it. At this age, I would go ahead and try to start weaning her from the bottle anyway; if she has such an aversion to it, it probably wouldn't be that hard. Also, because it sounds like she's developed an oral-sensory issue, you should definitely seek therapy for that now before it gets worse; as I said though, see if the speech path. or the OT deal with this in your area, but someone should be able to offer you some help. We help little ones like this in our clinic all of the time.
Let me know.....
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thanks for the reply ....
when i saw the speech doc she came to my house and tried to watch me give her a bottle ....
All she did was see dd screaming , fighting , hitting the bottle away etc. She did see her take maybe 2oz tops ( force fed slighty ). Her conclusion was no problems with swallowing !
We are on the waiting list to see the occupational therapist but have been told there is upto a 2 year waiting list :-X.
DD has had no tests done by anybody the most that has been done was a quick listern to her heart >:( as if thats going to solve all problems.
The trouble is as I manage to dream feed her just enough to maintain her weight nobody sees the full problem. My peads exact words were " she looks fine so I expect she is fine ". What aload of total :-X. My health visitor told me that if I hadnt been dream feeding and adding rice etc dd would of lost alot of weight. Maybe this would of made the pead take notice but Im not prepared to have her starve etc. The 1 time i left her to feed when she wanted she took 4oz in 24hrs and had to be tube fed which was the only thing the pead did..... not that it solved the problem.
i took the tube out after 2 days as she kept gagging onit when fed solids ( worse than normal ) and it was taking over an hour each time ( 6 hours a day sat holding a syringe ) Also i didnt want her to lose what sucking etc she had.
His view seems to be long as shes fed it doesnt matter how , things are ok. He has no interest in WHY she wont feed.
I used to add baby rice to her bottles when she was on normal formula to try and boost the calories and she took this a little better.
Whats the thickner called do you know in the uk?
As for weaning off the bottle its hard as she NEVER drinks unless asleep or VERY SLEEPY. So the only way for me to dream feed is to use a bottle. I do give her sippy cups etc to play with and hope that one day she might just drink but no joy ( think we have every cup on the market as you never know the new cup might just do it ) :D
As my pead has just about washed his hands of us Im going to be requesting a 2nd opinion ( any opinion as he hasnt given us 1 ) Hoping that at least she might get some sort of tests done.
Its gone on far too long now , shes suffering , my 2 year old is suffering and Im wornout and fedup of all the stress.
Karen
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Have just managed to speak to speech and language etc and she is coming to see us at lunchtime tomorrow! Hopefully she will be able to help.
She did say that if dd had Dysphagia then she would be coughing etc whilst sleep feeding???? Is this true?
She also said we would have problems doing a barium etc as DD wont take a drink while awake?
How did you get yours to do this test?
Karen
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I don't necessarily agree that she would cough while sleep feeding as Luke never did, that's why they like to eat when tired because they are so relaxed they don't even react to the liquid entering the airway.
I absolutely do agree with the part about her not taking a bottle when awake though, sorry I should of thought about that. The reason Luke did it is because he was SOOOO young. With your lo being older, it will be much more of a fight. Let me know how things go!
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Well we saw speech therapist on thursday who wasnt much help ::). her answer was that DD has a bottle phobia and her instructions were not to show her a bottle whilst she is awake !
So to cut a long story short DD only managed 10oz that day! She has now got to the point that you cant even dream feed her as she wakes and fights the bottle.
So friday through to saturday she had 2 oz :o
i took her to the hospital and after telling the doctors i was going to cause alot of problems for them etc etc if they didnt sort her out she is now being tube fed till we get to see somebody who actually knows what they are talking about. For the first time a doctore is actually going to do some tests :) poo, wee etc and request a barium. This doctors was quite surprised that I had been left to cope with this alone for 9 months with no help from the pead etc.
So finally there may be some light at the end of the tunnel.
DD at present is at the hospital getting her tube put in AGAIN as she loves to pull it out :-X
Will let you know how we got on when we see the doc on tuesday
Karen
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Good Luck Karen - glad you are getting some answers, way to stand your ground!! :) Keep us posted....
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Hi nancy,
I have just read your post on The Swallowing dysfunction. My ds has had problems with eating since he was born(now almost 7 months) he has never been a big eater and has always spit up all the time(to put in mildly). He eats better at night when he is sleepy or sleeping, and has always been very nasel. My doctor has always treated it as a milk allergy(there are no allergys to anything on either side of family). We went to soy milk when he was 2 months and nothing had gotten better. I kept going back to my doctor and he still says milk allergy and didn't ever seem to want to put anytime into it. Ds has always choked and gagged while talking bottle, i always thought it was because he was so nasel and had a hard time breathing while taking bottle. He has been gaining weight fine though, he is over 18 lbs. He has never been a great sleeper as well. Yesterday i took him to a different doctor to get a second opinion. He said he really doesn't believe it is a milk allergy and for me totry reg. formula again. So I started that yesterday. He also said he really can't give me an answer to my questions so has referred me to ped. should I bring this up to the ped? It seems like I have to fight to get to the bottom of this, I thought doc were suppose to be there to help when it really seems they don't have the time of day. Ds is usually a pretty happy baby but it has always been a big fight to eat. He still wakes twice a night to feed and I know it is becaus he isn't getting enough formula during the day, although getting what he needs in a 24 hour period. He eats so well while he is sleeping?? so are the symptoms just like, Nasel(stuffiness), vomitining, I usually say spitting up but when at doc yesterday lo spit up like 5 times in the 15 mins we were there, like he usually does and doc calls it vomiting), coughing and choking during feeds and not having good sleeping habits? If you could help me out with this it would be grestly appricated. I know my boy is healthy cause of good weight gain but if he is in any pain or discomfort I just want to get to the bottom of this.
Thank you,
Nicole
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Oh Karen, your story breaks my heart. {{hugs}} I too say good on you for sticking to your guns!!! Please keep us posted on how you both are doing.
Nicole, I'm sure Nancy can help you but I just wanted to say I think you should definitely bring it up with your paed. Could be reflux related as well...and a lot of refluxers will over eat to try and soothe the acid down. Big hugs to you too and keep us posted.
Sharon
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Karen,
Your story breaks my heart too, but the bottom line is that until you get this figured out, that tube will be the best thing. I'm really sick about the fact that no one is able to give you the help you need. I'm glad that you've found a doctor who thinks it's awful that no one has helped you through this entire 9 months. Sounds like he has some compassion and a desire to help. I REALLY think you need to try thickened liquids and to maybe just get your lo off the bottle. Start trying open cups and straws with thickened liquids. What you REALLY need is a modified, but that could be difficult for 2 reasons 1) we already discussed it will be difficult to get her to be compliant for the test because she won't take the bottle when awake and 2) it doesn't sound like any of the speech therapists there no what to do!!!! Your lo DEFINITELY needs some oral-sensory therapy at the very least, did you mention this to the speech therapist? What was the reaction?I don't have time tonight, but I will try to find some websites about this therapy if I can and post them here for you. Maybe try an occupational therapist??? I'm very frustrated with your story-it makes me sick as I know how frustrated you must be!
OK-Nicole, I would definitely bring this up to the ped-but, don't be surprised if he's clueless and don't be shocked if you have trouble finding a helpful therapist. I honestly would suggest trying thickener as I've mentioned previously in this post, just to get you started. I always try to recommend everyone following the correct protocol, but it seems that most individuals rarely get the help they need! Your story sounds much like Karen's, so yes, I think the symptoms are all there, I really just wish I could see your lo!!!!Definitely let me know if you have more questions (or I didn't answer a question for you), I try not to give out more info than you ask because I can't remember what I've already posted and don't want to be redundant!
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Hi,
Thank you for your response.
So I was wondering how I should thicken his formula, with cereal?
Like would I just add rice cereal(he usually eats oatmeal cereal) to his bottles. How much should I add and will this interfer with his other meals. he currently is taking 1/4c cereal for breakfast and supper and 2 Tbsp of veg for lunch(although not a fan of being feed from a spoon). I would like to try this before we go to the ped.
I have a really hard time getting my questions answered from doc, should I be pretty push about it. I have read some web sites on this and have printed some things out, should I maybe take them with me, or do you think he/she will be affended(I'm so bad with feeling like I am making someone go out of there way)Geuss I have to get more of a backbone in order to get to the bottom of this. Thank you for your help
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Hi all
I have tried different cups , liquids , even thickened liquids etc but she just has no interest in them. She will quite happily play with the cups, bottles etc but as soon as ANYTHING goes in her mouth she puts it down.
We are on the waiting list to see the occupational therapist but have been told its up to 2 years wait >:( funny as its the same person who is the speech therapist ! i asked why she couldnt do it there and then but apparently thats not how its done we have to wait our turn )
The speech therapist totally blanked every idea I suggested to her .... and in my opinion doesnt know what shes talking about.
So for the time being we will just leave cups etc about for her to play with and hope that she might take an interest.
One thing I have noticed in the couple of days she has been tube fed is that her solid intake has got better. Previous feeds were
1 jar baby food if lucky
15 - 20 oz peadiasure
When on the tube feed she is eating
2 big jars food
2 fromage frais
20 peadiasure
14 water
bits of finger food through the day
Will let you know how we get on with the doc on tuesday
Thanks for the support :)
xKx
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Okay, Nicole-the way to thicken is with a true liquid thickener like thick-it or thicken-up which is a powder that can be found at any pharmacy, you may need to ask the pharmacist to help you find it. It's cheap and you can thicken to any consistency with it (nectar, honey or pudding). I recommend trying nectar first and because of the age of your lo it may take him a while to become comfortable with it so give it at least 3 days before you try honey thick-if you still don't see any results-come back and ask me more questions and we'll try to problem solve!
Do NOT thicken with cereal. It can cause lots of problems and while a dr. may even tell you to try this-DON'T! It doesn't thicken things evenly, your lo will get some gulps that are super thick with cereal and some that are thin and runny.
Your lo may not be a fan of being spoon fed either because the food is also too runny and he may need it thickened a bit too. Just add a little of the powdered thickener to the food and try that. Some of the foods are plenty thick, but things like peaches and squash are pretty thin and could be thickened. I did this for my son for quite some time.
If you dr. won't just look into dysphagia if you've brought it up to him, then definitely go to him with the info that you've researched so that he knows how serious you are about it and he knows that you want something done about it. Yes, you may have to be pushy, but this is your baby and you need to do whatever you can to make things better for him. If you have more questions, let me know!
Karen-
I'm definitely glad that she's eating better with the tube feed and definitely keep letting her play with the bottles and cups, that's the best you can do for now and just keep giving her trials of liquids in them.
As for the occupational (OT)/speech therapist (ST) situation, what do you mean that they are the same person? This individual has separate degrees in each of these areas? That seems a bit strange to me and almost impossible that she practices in both fields. Is there another facility where you can seek these professional out? I tried to look up some info online for you about oral-sensory therapy and really couldn't find anything that fabulous for you, you may want to try a search yourself and see if you come up with anything helpful to you. Please let me know how things go with the doctor! Good luck!
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thank you for your help,
I will post later to let you know how things are going. :)
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Hi
well we saw the doc tuesday and she has booked appointment for Keely to have blood tests and also a ph test! Finally we are going to see a doctor who knows what they are doing !!!! ;D
Take about 8 weeks for the appointment but atleast we have one. Bloods etc should be in the next 2 weeks.
Will keep you all posted
xKx
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Hi
Check for my posts my story is very similar with DS but lukily it got sorted when he was six months. I used to administer the NG tube in the end because he pulled it out so often, any questions, happy to help
Take Care
I know exactly how you feel HUGS X
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Had the blood test done ..... no results yet! got the ph probe tomorrow.
Just got the appoinment through to see the doc and get the results etc ..... in MAY :-X what a bleeping joke. That will mean we have waited over a year to try to get this sorted. How i hate these people at the moment. makes me so mad that they expect my dd to suffer a few months longer etc when they could just take 5 mins extra to sort this out.
well im not waiting that long im going to insist that they have this sorted out by next week as TUBE feeding her is not the answer! Its just more pain and upset for her everytime it comes out or has to be changed. Rant over :-[
karen
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Oh Karen.....
I could just scream at them for you. I know, I know and the tube is not the answer, I went through this all and it's not on.GO back and demand they get it sorted now. And even if they say there are other sick children... yes you know... and you feel for them... but this is your baby and I know what it's like to go through this. BE STRONG. 9 MONTHS IS CRUEL. FULLSTOP.
Here for you and you are such a good mummy for fighting for your DD. A true mummy, a good mummy, keep going I promise it will be over soon X BIG HUGS X
The other thing you can do I'm not sure if your in the Uk are you if so I'll tell you?
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yes Im in the uk........ sometimes wish i wasnt lol
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here goes worth a try.
When my Ds was going through all this I rang Bupa and asked if they cover babies they said yes, I said even who is already diagnosed with reflux and has had bonchulitous they still said yes, I asked how much it would cost to cover my DS as at that time we hadn't had any tests and they said £20 a month. Now I don't know your financial cir!@!stances but it was the best £20 a month we have ever spent.
A) we got our son to see a specialist pead that week, tests and results the next week.
b) our doctors woke up and listened as soon as I mention the specialists name
c) the specialist had more time to listen to me and the symptoms, he trusted me, he even dismissed the DISGUSTING letter the local hospital had written which I have kept as proof of our battle, he said "forget about this and waived it in my face, he said they haven't got the time or resources to know what is wrong, but I have, start at the beggining & what a relief!",
d) he left no stone unturned (we even had our DS tested for latex allergy),
e) we have had a stream of true proffessionals helping us on the specialists team that he had worked with for years and had hand picked himself, and they have been so, so supportive at one point our dietician rang us at 8pm to see how our DS was doing after a day of me ringing her about 5 times begging her to find a way to make our DS drink so we could take the tube out, they never stopped offering us hope.
And today things are a different story for us but that £20, WOW it was just so worth it. i think in total after one year our bill with buppa has been about £2000 that they paid for and we've paid £240. It may be more but it's worth a call if you haven't already tried.
Let me know how you get on.
Hope your not too low today, HUGS again as I said from 1 mum to another who's been through this, you really are amazing to be fighting her corner and as someone said to me once when I was too low noone else can fight thier corner you must be strong for them, your time to break down when it's all over will come, but for now take every ounce of love you have for her, and turn it into strength mental and physical, and as nature intended, protect her with all you instinct gives you, if you want answers now you fight for them now. If your partner/hubby has to be out getting food to go on the table that's what men were ment to do the HUNTER this is what mother nature intended for us mums, I think now only the lucky in a funny way get to know what true nuturing,protecting, caring and loving & ultimately bonding is really about.
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Thanks so much for taking the time to help ( maybe you should work for the nhs ) ha ha.
My hubby starts a new job in a weeks time which funny enough has free bupa cover so we were thinking of taking that route. have to wait a couple of weeks first but seems like it might be the way to go .... or just pay the money! ? !
After tomorrow i will be able to find out more etc as to why i have to wait till may when we are seeing the same doctor for the Ph probe.
once again thank you for your help ..... some times seem so alone with all this and the sleepless nights done help :-[ I have booked a nervous break down in for when this is all sorted :)
karen
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Lovely to see you still have your sense of humour ;).
Ps. good luck tommorow
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Hi,
We finally got our appointment with the ped. It is next tuesday. Will post to let you know how it goes. Wish us luck.
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As I am reading this site, I can't believe how much this sounds like my little man!! FINALLY, it looks as though I might have some answers.
I do have some questions if someone can help me??
My LO had a upper endoscopy last week, but dysphagia was not even looked at. The paed thought that he might have inflamation due to his reflux ( now I am even wondering if it is reflux), but after reading all symptoms posted here, it sounds like classic dysphagia. He won't take ANY fluids, put any drinking device near his mouth and he goes mad! He will eat solids quite happily though, thank goodness. (LO is 7 months). Why will he eat solids though?
Surely the upper endoscopy would have shown something?
Other than an MBS, what other tests can be done?
How else can I get fluids into my LO other than tude feeding? My paed doesn't want to do this as he will eat solids and "apparently" gets enough fluid this way.
Lo has not had any chest or respiratory infections, is this uncommon?
I have just rang LO's gastreoentologist and booked another appointment to specifically look at this possibility as the Paed thinks his drinks problems are behavioural! I just can't understand how it could be.
Mel
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When we was desperate at one point our dietician advised up to try Nesquick a chocolate milk drink and start by putting it on his dummy get him used to the colour and taste, let him see how it was mixed then introduce it by suringe straight into his mouth, we used to let him play with the suringe and put strawberry jam on it he loved that in his sandwiches and got used to the syringe being part of his solids not his fluids. Then eventually he would take about 4 ounces out of a sippy of chocolate milk. Watch for thier poop it is very dark so don't be alarmed when they have this.
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Karen,
Luckily, Deb is able to offer you some advice as to how to deal with the physicians in the UK, I don't know anything about how your system works as I'm in the states. But, I can tell you that I know that the UK is now so ill advanced in medicine that they should expect you to wait until May for anything when your lo has struggled for so long already. Put up a good fight, you truly are your lo's advocate!
ColenLiam's mom, please let me know what you find out!
Mel,it isn't totally unheard of to not have had any major respiratory issues. My son would get congested for short periods of time following a feed but it never developed into anything worse than that (thank heavens!) At this point, your lo is old enough that he has probably mastered the spoon quite well as it is a much more controlled way of eating. Deb gave you some great advice on putting liquids on a binky or even just controlled straw trials (i.e., plug the straw with your finger and put some liquid in his mouth. At your son's age, I would just work on open cup drinking and forget the bottle. He's old enough to get rid of the bottle and though it will be messy, it's always better to get to a cup ASAP anyway. I'm glad you've called your lo's GI doctor, hopefully he'll help you out. At 7 mos., his drinking problem has maybe become behavioural at this point, but there is a reason for it, he didn't just decide he didn't want the bottle just "because", he's really too young to do things like that, something was wrong that made him refuse his bottle, whether it's dysphagia or something else! Let me know if you have more questions!
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my DS is now 13 months and I completely second what Luke-n-me just said.
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Thankyou for your replies!
I have been trying an open cup, and LO was taking some fluid this way, so I will keep perservering with that. He won't take a sipper cup and hasn't mastered the straw yet, but will at least put it in his mouth without screaming.
I am looking forward to seeing the GI in two days for some answers.
Thankyou again.
Mel
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Well we have now had the ph probe ..... i took it out a couple of hours ago and hubby is taking the box to the hospital as we speak!
As for waiting till MAY I soon put the doctor straight on that one and he did say he would ring me hopefully monday with some news regarding the ph etc. I did say i would be ringing him EVERYDAY if he didnt :P
Another way I manage to get fluids into DD is to add water to her solids. She doesnt like the lumpy stage food only puree or finger foods so when she has puree I can manage to add maybe 2oz of water to that. Also another good one is yogurts or if too runny fromage frais
Now we are just playing the waiting game ! Still we have waited nearly 10 months so the weekend wont be too hard .... hope fully the results will show something ? If not Im not too sure what next.
Whats the next step? More tests? Or do we just do as the doctors seem to think and tube feed her till she leaves home ::) lol How I can laugh i dont know but maybe its the thing thats kept me going these past 10 months
thanks girls for all the help :)
karen
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Karen,
I'm, unfortunately, at a loss as to what to suggest now. The speech therapist wasn't helpful and if you can't get a modified barium swallow completed, I don't know what to do. Therapy is really the best answer, but unless you can find a different facility/therapist to help you, I don't know what to say!!!! If you could move to Ohio, I'd love to help you, but basically you just need to hook up with a therapist that has some knowledge about feeding disorders in children. Do you have a national organization that could help you find someone? In the states we have the American Speech/Language Hearing Association, if you arent' able to find someone yourself you can call them and they can point you in some sort of direction. Sorry, I don't think I'm being much help at this point! I'm so frustrated for you! >:(
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Karen
Any news???
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hello all
well we now have the results from the ph probe NORMAL ! the doctor has said he cant think of anything else he can do ??? So we are yet again back to the start and left to cope alone once again.
We have another problem also now due to the tube feeding. DD has become very frightened everytime you go near her face ( cant blame her ) She has started to scream and hit my hand away even when trying to just give her the paci which she normally loves. She seems to be much harder to settle as she seems to be thinking everytime I go near her that something nasty is going to happen ( more tubes or sticking the tube etc)
Anyway the tube came out sunday morning so I decided due to her reaction not to get it put back in :-\ I have been managing to give her milk when shes sleeping etc and added water to her food.
I cant think what else to do !
How much fluid is safe for her to survive on ?
I cant believe we are back to the begining again. Shes 10 months old in a few days and this has been going on since she was born. Any faith I had in the uk nhs has gone.
Now Im left with a baby that not only wont drink and eats very little but also a baby that is terrified every time I go near her >:( All this due to doctors who dont do their job!
the next few days Im going to be spending time with her trying to regain her trust again :'(
Karen
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Karen,
OMG! I could seriously cry for you! I swear this is the biggest shame! If there were ANYTHING I could do to help you, I would. Please don't give up, maybe even consider traveling a bit to find someone else who will help you, this is just ridiculous to me! >:( I can't even imagine that a doctor would just turn you away and say, sorry this is it, without making certain that something were happening (i.e. therapy), he should be able to make that happen at least! If there's anything I can do, please let me know.
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hi,
Just thought I would post and let you know how our apt went today.
The doctor we had was really nice and seemed really good. He brought up the swallowing disfuntion and GER but doesn't believe their is a problem because ds had great weight gain, and his lungs are clear. Even though he is very nasel, doc said it is more just allergies as dp has allergies to everything.
He said what is causing the spitting up and all is the valve at the top of the stomach, which closes on adults is pretty filmsy on babies and some more than others will take time to develope.
Doc, says when lo is crawling and walking around more the spitting up should stop.
I actually feel pretty at ease with his information so I think it is a good sign.
Karen,
Im sorry you are going though all of that. sometimes docs really suck, unless you can find one that truely cares. For some reason its hard to find.
But I just wanted to Give u a hug(although I know you need moe but its a start) :-*
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:'( Oh Karen.
Please call Bupa we went through all this, and it is the only way to get the NHS to listen. As your DD has a problem whatever it maybe. I am soooo >:( for you.
Let us know how you get on.
Last minute thought one thing we did was take our DS on holiday for a week, out of our environment this is when we turned the corner.......
1) he felt secure mummy and daddy just giving him 110% attention we stayed in a little shallet in the middle of nowhere. I as my father put it nursed him like a little newborn. To build our trust back.
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colenliam what your doc said was true for our DS ;D
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Thanks everyone for the hugs and good wishes. It tells you something when people on the internet care more than the people around you and who are paid to look after you.
We have had a couple of good days ( I say good meaning for us )
Maybe we should move to the US :D as the docs there seem to be better clued up on all these issues. :)
Only time will tell at the moment. every body keeps saying maybe she will grow out of it ! I can live in hope lol
This site is a god send to all us mums and the people who have replied to my posts have given me the extra hope to continue with all this
THANK YOU :)
Karen
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Hi Karen,
I hope she's still doing well?
Just thinking of you.
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Well things are not too bad i suppose as far as her drinking is going..... sometimes she will sometimes she wont. Im giving her some time to do as she wants and not what the docs say she should do etc
If we could just get her to sleep at night. Last night i got a tatal of 2 hours sleep :'( and havent even spent a night in my bed since before Xmas! I was in tears at 3 am this morning as im so tired due to DD waking every 40 or so minutes and her waking my 2 year old.
Sleep has been a hard thing to get sorted with her due to her not having much of a routine due to the bad feeding etc
Im at my wits end now and havent even got the brain cells working enough to think anymore.
Karen
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Glad she is taking some on and off. What's the solid routine like?
How many teeth has she again...do you think it could be her teething?
What are her symptoms now hun?
Do you give Calpol or anything?
Silly Question probably butI found two things with my DS he has asthma only diagnosed a month ago . was such a bad sleeper always awake on and off, since the pump sleeps right through unless he has a tooth coming. Also I give Medised a paracetamol based medicine helps him sleep with teeth or cold what do you thing about DD?
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Hi
she is teething but the top 4 are just about through. All coming at once poor thing.
This isnt the problem with her sleep as she has been like tis for months.
She wont sleep in her cot will only sleep in her bouncer! Tried last night in the cot and after trying to settle her for 15 mins she was VERY sick all over the cot ( thats what she thinks of bed ) lol
I give her medised or calpol maybe even nurofen but as it says 3 days use bit hard when its going on for months.
When i do get her to sleep she fusses in her sleep , figits tosses turns alot etc and wakes up. She will wake just about every 40 mins.
As far as symptoms go shes just the same still gags alot on milk and solids which still have to be puree. Its pot luck as to if she wil have a bottle . She will only drink after about an 8 hour gap between feeds / or Im still having to dream feed her!
The medised doesnt seem to make her sleep better even though it worked with my other DD who slept 12 hours solid the first time she had it :o
I dont know about the asthma line ???? Hope not as my mum died of that and wouldnt be able to cope with all that!
Karen
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I was going to swear, I >:( can not believe your circumstances.
Ok so the Asthma line is something you can look out for, child asthma sounds can be different from adults and my ds was a night time wheezer (not lemonade/bottle drinker I wish) LOL.
check out this website. http://www.rale.ca/
Asthma would deffinetely keep her awake.
How's the Bupa and your DH job?
Not sure where you are in the Uk, but if all else fails London and Barts is the place to take your DD.
The sleeping issue is getting out of hand for both your sakes....
How much does she weigh?
How much did she weigh at birth?
PLUS.....one thing your already a good mum to one other child, you know her signs, and you know what is roughly normal for babies, (I don't think there is a standard thing for children) but what Karen do you think is wrong hun?...write it down here sometimes you even need to admit things to yourself, try throw caution to the wind and just type whatever comes into your head....sorry I don't mean to sound pushy just trying to help out ;).
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Hi
Thanks for all your replies. DH started his job monday so abit soon to attack bupa maybe?
Keely weighed 5lb 6oz when she was born, 4 weeks early. She spent about 3 weeks in special care as she had really bad jaundice ( above the transfusion level ) Then for 4 months had to have blood tests etc due to low heamoglobin. Poor thing didnt get the best start to life and has been poked and prodded ever since!
Shes now 10 months and weighs 18lb 6oz approx which is a good enough weight. We are all skinny.... my eldest daughter 10 is so skinny i wonder if she ever eats lol
Its so hard to think what is causing all Keely s problems. My other 2 girls were such big eaters and good sleepers ( lee anne would sleep from 6pm through to 8 am!) ;D
I spent most of yesterday looking at homeopathic remedys etc and have found some that might just fit the bill to sort out the sleeping. I can hope lol
Last night was the first good night in months. I put her in the cot at 10.30 after her dream feed and she only woke up about 6 times till 4.45 we got up and at 5.30 she drank 4oz!!! Sounds bad but was good for US. First night in my bed for months :o
Ive been told by some people that maybe i just have a very fussy baby ha ha no kidding
She does have a REALLY bad attachment to me and screams etc when i so much as leave the room or DH holds her. She goes mental when you get her changed etc ( never known a baby like it ) have to really fight to change her!
Think Im starting to waffle lol so best end it there :-\
Oh I live in sussex near hastings !
Karen
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Brilliant...for last night really pleased for you, hope tonight is just as good or even better. LOL
My Ds is having a rough night keeps waking every hour since going to bed....not sure what he's up to, had a low temp for the last 3 days...I keep posting hear about teething....then I think he might have a cold as he has a runny nose.......rash...cough......just don't know at the moment...all the other babes in nursery seem to be doing the same and I was talking to one of my friends her baby is only sleeping for 2 hours a night at the moment....... :( and she's pregnant again!!!
What I was saying about the London and Barts, if she is getting worse not better as she was, then I'd get in the car and pop down to thier A & E...might sound a bit far fetched but if this continues for all your sakes....including your other children you must be really tierd, they have some of the best Gastro docs in the county.......they'll find out for you what's going on. If you get to the tube stage again that is!
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Hi there,
Just wondering if anyone knows where I can get a MBS done for my son in London, UK...... he has reflux and we are finding the hospitals to be very unhelpful. Everytime we mention that we think he needs a swallow study , they just keep dismissing the idea even though he is constantly gulping whilst drinking. This has now led to milk refusal and we struggle to get even 300-400 ml down him a day (and that too is fed with a syringe). We have decided to take matters into our own hands and have the MBS done privately , even if it is just for our own piece of mind.....
Any help would be most appreciated as we are at our wits end now. We have suffered this problem for the last four months and it is now getting unbearable. He has been on all the meds for the entirety of this period but they have made no difference at all. We are also thickening his milk and although this has reduced the gulping , its still there and still prevents him from taking more than 30-40 ml of his feed.
Thanking you in advance!
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Calypso, sorry to hear about your problems, I am not sure where you would get it done. Have you tried BUPA or somewhere private?
Is your own doctor refusing to refer your LO for a MBS?
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Hi all,
Well it was his teeth.
Callums mum - I looked on the internet they have a facility for a MBS below - deffinetely call Bupa they cover my DS for £20 a month....brilliant and this was even when he had been diagnosed with reflux already. However.......
PPS. you can go to a bupa hospital for a routine appointment with a bupa GP which costs approx £15, without being referd by your GP, it's how the rich go to the doctors I suppose..... :-\, then they will refer you privately if your GP wont.....Beat the system!. List of bupa hospitals' at the bottom...HOpe this helps let us know how you get on {hugs}, keep fighting for your babes x
The Royal Marsden NHS Foundation Trust
Fulham Road
London
SW3 6JJ
The London site is located in Chelsea, close to the centre of the city and near to first class hotels, museums and the shopping areas of Knightsbridge and the King's Road.
Travel by underground
The nearest underground station is South Kensington which is about seven minutes walk away through Onslow Square. South Kensington station is served by the Piccadilly, District and Circle lines.
Travel by bus
Several buses run past the hospital or stop nearby.
Numbers 14, 414 and 345 pass the hospital.
Numbers 11, 19, 22, 70, 74, 211, 319 and C1 have stops within easy reach.
Parking
Please note that the hospital is unable to offer car parking facilities and that apart from a few metered bays and some disabled bays in Dudmaston Mews, on-street parking is strictly prohibited. Cars illegally parked are likely to be clamped. Cars parked in 'Resident Only' bays in Chelsea Square are likely to be towed away. Patients and visitors are strongly advised not to travel by car to the Chelsea site.
Useful numbers
London Travel Information (trains and buses): 020 7222 1234
London County Buses: 01737 242411
National Rail Enquiry Line: 08457 48 49 50
London General Transport Services Ltd: 020 8646 1747
South London Dial a Ride: 020 8784 6016
Rail timetables are available on the National Rail Enquiries website.
Speech and language therapy
The Speech and Language Therapy (SLT) service at the Royal Marsden Hospital is staffed by state registered specialist SLTs skilled in assessing, differentially diagnosing, treating and managing people who have communication and swallowing difficulties. These difficulties may be caused by the cancer or its treatment, and may be long-lasting or temporary.
SLT intervention may be appropriate at any stage of the disease process and may include:
Provision of information on swallowing and communication within the context of the patients diagnosis and treatment
Assessing a patients swallow function at the bedside or using videofluoroscopy (modified barium swallow)
Providing and monitoring exercises to improve and maintain muscles used for speech and or swallowing
Assessing patients who have delayed language processing and provide strategies to help them speak with and understand others
Providing and adapting practical strategies to help others communicate with the person with speech or language difficulties
Being an advocate for the patient who has difficulty communicating their needs or concerns
Referring patients on to local services, if appropriate.
Patient referrals
Patients must have a hospital number to be seen by the speech & language therapist. Referrals may be written or verbal and are accepted from the patient, carer or any member of the multi-professional team.
The Speech and Language Therapy Department is open between 9.00a.m and 5.00 p.m
Monday to Friday excluding Bank Holidays. All routine referrals are dealt with during these times.
Staff
Helen White, SLT Team Leader, Surrey
Patsy Allan, Specialist SLT, London
BUPA
Gatwick
BUPA Gatwick Park Hospital
Povey Cross Road
Horley
Surrey
RH6 0BB
Telephone: 01293 785 511
Fax: 01293 774 883
Email: cservice-gp@bupa.com
Ilford
BUPA Roding Hospital
Roding Lane South
Ilford
Essex
IG4 5PZ
Telephone: 020 8551 1100
Fax: 020 8709 7804
Email: cservice-rd@bupa.com
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Hi Everyone :D
Found this site yesterday and am so happy to have read about dysphagia as I am at my wits end about my lo's feeding habits. My lo is 14 weeks and during the first few weeks we did notice he used to gulp a lot on the bottle. We put it down to drinking too fast, but thinking back now it was probably choking. He then developed a tummy bug around 8 weeks which went on for a while and he became extremely windy on the bottle as well as choking at times. The doc said to change to lactose free formula and suggested using gaviscon in his feeds for the wind. This has not resovled the problem and his gagging on the bottle has gotten worse with bad wind on top. The past 2 weeks have been unbearable to feed him as he not only looks like he is chocking at times, but he has so much air with it that he is now very uncomfortable. He also cries when the bottle comes near him even after he has winded and has only taken half an ounce and we know he is still hungry as how can a baby be satisfied with half an ounce when they haven't eaten for 3 hours. We think his air problem is due to him not swallowing properly and thus gulping in a lot of air whilst trying to swallow. The bizarre thing is that he is a great feeder when sleepy and will take 4-5 ounces no problem. When he is fully awake is when all the problems start and we can take approximately 1-2 hours to feed him 4 ounces. The doc reckons he is just a fussy eater with a bit of wind and as he has not lost any weight he is not worried, but I cannot accept that as why does he feed so well when he is sleepy. I think my HV knows that I am at my wits end and she has promised to talk to a speech therapist about this mabye being a swallowing problem. The only thing is that if we get referred to a speech therapist it will take months to see her
( the good old NHS) and I am now tempted to try thickening his feeds on my own to see if it helps. I was wondering if anyone in the UK has used the simplythick in their feeds as I read on their site that it is not for babes under 3 years - what to use then in the UK for a 3 month old?
I am going to get him weighed tomorrow and am convinced he has lost this week as he has been really bad the last few days - wish us luck.
Look forward to anyone's comments on thickening feeds in the UK and any advice would be great.
Monique
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Hi Monique,
Firstly 17 weeks you can start to wean on baby rice, we did as per our dietician, so please do not worry too much.
Helpfull hints I have found with all the trouble we have had with our DS now 14 months
1) Have you got a GOOD chemist near you? (the pharmacist know everything about the UK brands) take the name of the thickening agent and demand they find you an alternative.
2) What milk is babe on? Ring thier head office, I always found answers I needed from theese people. Cow and Gate were particularly good. The reason being is they have to have qualified Docs/nurses when advising on feeding matters if you ring head office with a general enquiry ie: How much sould baby be taking, you'll get through to a feeding specialist go from there and have a list of questions ready.
3) Find head office number by website & 118 118.
4) Omnio comfort cow & gate is a thicker feed but it does have a resonably high lactose count (not as high as other milks) SMA GOLD being the lowest but it a thin feed.....BUT you could find out your answer to the feeding dificulty ie: baby takes milk better and less gas so the lactose wont be an issue......lactose can cause gas also that's why your doc may have prescribed other milk and gavison is for reflux (sickness in baby to thicken the milk once in the stomach) not to break lactose down. Colief does this.
I hope this helps and is a start.....let us know how you get on good luck, and I typed quick if you do not understand anything feel free to post back and I'll explain in greater detail :)
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Hi Monique!
Where did you read that about simplythick? I just got on the website and couldn't find it. There was a case study on there about premie twins using it though. My son used it from 3 mos.-2 years with no problem and we recommend it all the time.
I would definitely research it though. Try not too stress too much about what you thicken with right now although I really highly suggest finding something better than cereal for many reasons. If it's your only alternative than do what you have to, but thickening with rice isn't a good idea, even though doctors recommend it all the time. It's a very inconsistent way to thicken.
I am sorry this is going to be such a hassle for you in terms of being able to see a speech therapist. I would go ahead and try to thicken on your own in that case, because you really can't wait that long. I would start with nectar thick and give that a few days and if you see no improvement, try honey thick. I really hope you are able to see a speech pathologist soon, but in the meantime, hopefully this will help!
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Hi Nancy :D
Thank you for your advice - it is greatly appreciated.
Firstly, I must apologise for stating incorrect information. :-[I did not see the comment about "not suitable for under 3's " on the simplythick website, but on a nestle website (see http://www.nestle.co.uk). I was searching for a UK company that makes thickener, and came across this statement which made me think that maybe all thickeners are not good for under 3's.
Having looked at the simplythick website again this morning I did read the article about the twins. I am going to go ahead and order the nectar thick as you suggested and feel much more comfortable now knowing your lo used it from the same age as my lo.I'm just hoping that simplythick will ship to the UK.
I presume it should be ok to use with a lactose free formula? One question : do you know if the simplyquick thickener is absorbed by babes or not - I have been told by the health visitor that gaviscon is not absorbed by babes and is also a thickener, but I think she means it thickens once inside tummy, not thickens the feed as such as it is not helping in the slightest.
Thank you again for your support and advice and apologies to all at simplythick. (oops). ;)
I will let you know how things get on and if we are able to secure an appt with a speech therapist.
Thanks again
Monique
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Monique,
The simply thick will be fine with lactose free formula, but what I think you'll find is that if it truly is a swallowing disorder, you can probably get rid of the lactose free formula as it's the dysphagia, not lactose-intolerance that's causing the issue (though I could be wrong).
As far as if the thickener is absorbed, I'm not totally certain that I understand the question, (so tell me if I'm way off), but simply thick is safe for your lo. I'm not sure what your HV means about the gaviscon, but I know it won't thicken your lo's formula and it won't help if the problem truly is dysphagia.
Hopefully you'll find some relief with the simply thick. If the nectar-thick doesn't help after a few days, you can use 2 packets to thicken to honey thick consistency. If simply thick doesn't ship to the UK, maybe contact them and see if they know of any similar products available to you. Let me know how things go!
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Hi, just a quickie, my lo has just been diagnosed with reflux and he too much prefers feeding whilst asleep or very relaxed, however he has started feeding better when awake after giving him the reflux meds. Is better feeding when relaxed/asleep a symptom of reflux alone?
Thanks.
xx
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I believe Yes it is, due to the indegestion they get just after feeding it's too painfull for them so they prefer to be relaxed to cope with it. ;)
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Thanks, it's so stressful trying to work out what his symptoms are caused by, luckily i think i can rule dysphagia out though.
Take care.
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I was just saying today to my mum how you just really hate to see your baby suffering and how very stressfull it can be!
Hand on heart it really will get better as baby gets older, just spend your time loving, cuddling and cherishing theese days even if they are full of screaching, heart renching cries, it soon goes and funny enough you miss it....you'll understand what I mean in about a years time.
LOL X
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Thanks for kind words, it is hard but it's all washed away when he sees my face and his lights up with a big gummy smile and excited laugh. :D
xx
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Your posting was very interesting. My 11 week old has never seemed to feed well or "right". He was born at 35 weeks, weighing 6 lbs 10 oz and the doctors say that he shouldn't have feeding probs unless he was born at 30-32 weeks. Anyway, after reading your post, i called the pediatrician and spoke to a nurse and described what he does when feeding. We ended up in the office to see the doc who has referred us to a speech therapist to determine if the barium test is necessary. I could answer all of the questions the same as you except my guy doesn't have an aversion to the bottle. (yet). He also eats the first half of the bottle pretty well, with minimal gagging. When i offer the second half he takes about 2 gulps, acts like he can't breathe and juts his head back to take a deep breath. He is also VERY congested all the time. was yours? It is usually not running out of his nose, but i can hear it in his breathing. It almost sounds like he has fluid or phlegm at the back of his throat. I have also wondered if i may be feeding him too much and that is why he gags. I don't know. he gives me the hungry cues even after half the bottle, and he will usually finish 5-6 ounces every 3-4 hours. But the last half is a struggle for him.
Thanks for your help.
Emily
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Emily,
If you came to me with your story, I would definitely recommend a modified barium swallow. My lo was congested basically after every feed and no, it didn't come out of his nose, it was like you could just hear the congestion in the back of his nasal passage/throat area. A lot of times you may not notice the problems until they are well into taking the bottle because as they drink, their swallowing becomes more uncoordinated. What did the speech therapist recommend? Definitely pursue it. Let me know if you have more questions!
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Hi, I would like to say thankyou to luke_-n-me and rooby rooby roo.( because of you we wouldn't have known about this) I'm new on here and only found the site because a member's husband off here (his nickname is the royles) on another forum posted this thread to me. My little boy Isaac has been crying and crying for weeks through his feed's and show's all the symptoms of dysphagia. So when we went to see the health visitor on thursday we mentioned it to her and she sent us in to see the doctor. We are now being referred to a paediatrician as the doctor think's this could be what Isaachas got. So hope fully his feeding should be sorted soon. Please could someone answer my questions for me?
What happens if this is what he has got?
How serious is it?
What can I do to help him until we get the appointment through?
What treatment does it involve?
Thanks everyone xxxxxxxxxxxxxx
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I'm so glad that once you found this info that everyone helped you easily and quickly, that's a great start. First off, how old is your lo? As far as your questions:
What Happens if this is what he has?: What should happen is that during the x-ray they will watch your lo with different levels of thickness in a bottle (regular, nectar and possibly honey or pudding thick) and they will determine what thickness your lo is tolerating. You will need to buy a liquid thickener and thicken his bottles to that consistency. The younger he is, the quicker he will come to tolerate the new viscosity and have an easier time taking bottles.
How serious is it?: Dysphagia can be a small part of more complicated issues. But when dysphagia is your child's only issue, it's no big deal at all. He will simply outgrow it with age. We finally stopped thickening Luke's liquids around the time of his second birthday. Some outgrow it much earlier, and some a little later, but the good news is that they all outgrow it.
What can I do to help him until the appointment?: How long do you have to wait? I didn't used to recommend this, but now I do when people have to wait forever-go to the drugstore and buy a powdered thickener and try to thicken to nectar consistency. It may take more than one bottle for you lo to tolerate it (or he may immediately take to it and be fine). If you go a couple of days and notice no change, try the honey consistency. The directions should be right on the container.
What treatment does it involve?: Unless he has developed severe oral aversions and oral-sensory issues, the only treatment is the thickener and some follow-up appointments with the speech therapist to determine how he is doing. Your lo will outgrow it. If you start to give your lo baby food, for the runnier foods you should thicken them by sprinkling a little powder on them too and when you mix up cereal, make it thicker, more like applesauce versus making it super runny as they suggest.
Let me know if you have more questions, I hope you get your appointment soon!
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Hi, thanks for answering my questions, Isaac is 9 weeks old now and this has been going on for most of the time. We had mentioned it to the health visitor but she kept saying see how it goes. We are moving on Friday so I need to register at the doctors on the Monday and then hopefully the refferal will go straight through. I'm really looking forward to enjoying feed times again, thats what is worse really he is such a happy chappy untilits time for his bottle, bless him. I hope everyone else is getting on ok xxxxxxxxxxxxxxxxx
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Good luck with your move and I hope you find some answers. If it is dysphagia, at least you've caught it early and hopefully you and your lo will be able to enjoy feeding times again. Let me know how you are getting along!
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This was originally posted by Luke-n-Me, but we seem to have lost the original thread :( . I know if anyone has any questions about this then Nancy (Luke-n-Me) is more than happy to be PM'ed with questions, or just post a reply here and she'll post back.
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I have read many posts regarding babies who are difficult to feed. Many are contributing this to colic, GER or formula intolerance. I just want to let you know of another possibility that is little-known. A swallowing disorder called DYSPHAGIA-something that can occur even in "typical"children.
My son is now 14 mos., but at about 9 weeks of age, he started to scream when presented with the bottle and refuse to take his bottle. I was lucky to get a couple of oz. in him. I went to the dr. week after week trying to figure out what was wrong. He did have reflux (which nearly all infants have) and at first it was contributed to the reflux. But after a trial of zantac with no improvement, I went back to the dr. Our next step was to try switching formulas(intolerance?), we tried soy-no help; then onto nutramigen-again no help. He was starting to slow down in weight gain, so then we thickened up his formula with cereal, it helped a minimal amount, but because we had to cross cut the nipples and make the hole larger, it was just creating the same problem. We also had a barium swallow to look for reflux-nothing significant was found. Finally, Luke lost a few oz. in weight and I was referred to a gastroenterologist at a Children's Hospital a few hours away. Nearly before I walked in the door, he knew what the problem. Here were the questions that he asked me:
1) Does he eat better when he's sleepy?
2) How long does it take to feed him?
3) Does he scream and when he sees the bottle/before he starts to feed?
4) Does he seem fussy while he eats vs. after he eats.
5) Is he congested or had any other respiratory problems.
My answers were:
1) He definitely eats better when he's sleepy
2) It takes at least 45 minutes to feed him
3) He does fuss/scream when he sees the bottle/breast
4) He is only fussy when he eats. As soon as the bottle is taken away, he's fine.
5) He's been chronically nasally congested for weeks.
**watch for coughing/choking and lots of gagging during feeds as well.
These are all signs/symptoms of dysphagia. 1)They eat better when they're sleepy because they aren't as aware of the liquid entering their airway;2) It takes forever to feed them because they are screaming and fussing trying to protect their airway; 3) They learn that the bottle/breast is something to be afraid of; 4) They fuss when they eat due to the liquid entering their airways (aspiration), if it's reflux, then fuss after feeding (drinking soothes reflux, it's after eating when they are burping up the formula/breast milk that the pain begins); 5) Anytime foreign particles enter the airway it can lead to upper respiratory issues.
He immediately told me that he was going to refer me to a pediatric speech therapist for a modified barium swallow (MBS) (x-ray of swallow function). I was immediately shocked because I AM a pediatric speech therapist and I had never heard of this-a "typical" child having a swallowing disorder. It's something that many medical professionals are unaware of, including pediatricians and obviously even speech therapist's who deal with swallowing disorders every day!
Sure enough, the MBS was completed and he instantly aspirated the liquid. I cried of course when I realized that all along we could have just had this study completed and gotten on with life. At this point he had been struggling to eat for 2 months!
THe therapist used some thickeners to thicken his liquid to a nectar consistency and immediately, he latched onto his bottle and started taking it with no problems. We had to thicken his liquid from then on (and still do). He is getting better, we did another MBS when he was 10 mos. and the liquid still got very near the airway, thus we still thicken. He will have another MBS in a few months and we will continue them until he no longer needs the thickener.
When we first started to thickener, it took him about a week to feel comfortable taking the bottle and knowing that it was safe for him to do so-his airway was no longer being compromised. He now drinks from a cup with thickened liquids and does great-no sippy cups though. He will eventually outgrow this and the way that he will outgrow it is by learning to compensate appropriately-he will learn to gage his drinking so that he can handle the liquid without it going into his airway. There is no therapy, it's purely a timing problem with the sucking/swallowing. Thickening helps.
If this sounds like your infant, talk to your dr. about it and request a prescription for a MBS. Be sure to find a speech pathologist who is used to and does MBS's for pediatrics on a regular basis-they are very different from adult studies.
Do not try thickening without first having a MBS as each child may need a different amount of thickening (honey or pudding thick, etc). If this goes on undetected it can lead to oral aversions, picky eating and sometimes refusal to eat. It can also lead to non-stop respiratory issues including congestion, ear infections, bronchitis and pneumonia.
I know how frustrating it is to feed a fussy eater and how desperate you can get to get them to eat. I decided to post a sticky because I've been replying and seeing so many women who are describing babies with this problem that I can't keep up with writing to them. I could continue, but instead if you have any questions, please post a message or a private message and I will get back with you ASAP.
_________________
Nancy
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Harriet's Mom,
Did you have a question? If so, I didn't get it, only a copy of my own post. Let me know..........
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Hi my lo is 8wo and has im not sure if he may have this, he def. feeds better/faster when he is sleepy.. during the day he fusses toward the middle/end of his feed.. he doesnt generally spit up only a tiny bit and it is mucousy looking..
when i burp him he seems to choke/gag on it but nothing comes up he hasnt lost weight or anything, but i am wondering if this may be the beggining of it?
Generally during the day it doesnt take more than 30 minutes to feed him though as he eats about 2- 21/2 oz and then starts fussing and i try to get at least 3 into him i dont want to push him...
He has been congested since he was born he is constantly snorting!
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In my opinion, since you are seeing early signs, I would take action now before he becomes more aware of the problem and things become more difficult. It does sound like the beginning. Let me know if you have more questions.
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Thank you i will certainly keep updating if i need help!
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If it makes you feel any better I am also an SLP- I work with adult dysphagic pts and I never really thought about it being an issue with your little one... I was surprised as I was reading through your post. I have a 4 month old who also has reflux... we had major issues breastfeeding and I was able to do it until this past weekend but I finally decided it wasn't best for us as my son had only gained 5 ounces in 6 weeks... I had to use a nipple shield as well so my supply had decreased. Anyway, he is on formula now and is still spitting up a storm (all day long, not just after a feed) and constantly is arching his back as if in pain... I am not sure what to do as we do not have access to MBS for peds here and the waiting list I am sure is horrendous in the city where they do do them. I was thinking I should start trying a thickened formula to see if it would help... what do you think? He was on losec from 2weeks -3months but we stopped as it didn't make a difference, he has also been on gaviscon and motilium... nothing seems to reduce the amount of reflux. Daytime is not bad for us (besides the mess for laundry... I didn't realize how much formula would stain), but nights are horrible... he is constantly up.
Any suggestions from the more experienced mothers?
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You may want to try the thickened formula or if you have access to simply thick, give that a try. It clearly helps with dysphagia, but also mostly clears up the reflux too. Once my son was on thickener both problems dissolved! :)
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Question:
Is is neccesary to have the Barium test to find out how much Simply Thick is the appropriate amount for your LO - considering it seems to be the only solution. I am sure he has dysphagia along with the reflux but am not too excited about my baby swallowing barium...
Thanks for any input!
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Ideally, you should have an MBS to be certain that the thickener is appropriate, however, you can attempt to thicken to first nectar and see if you notice change and then to honey thick if it's not working. If you're still having issues, then, undoubtedly, you should get a modified barium swallow. HTH! Good luck!
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Hi, just to update you. Isaac went to hospital 2 weeks ago and stayed in for 3 days to sort out his feeding problem and it turns out that he has reflux. We have to put 2 sachets of infant gaviscon in every bottle and he is now taking his feed's a lot better and putting more weight on thank god. Thanks for your help Luke-n-me xx
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I'm so happy to hear that you're getting along better!!! :)Thanks for the update!
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My 5 1/2 month old daughter has slowed down her eating (15-24 oz per day) over the past month and a half. Doctors are telling me it is no big deal because she is gaining weight...I do not agree with that! She has a milk and soy protein allergy and acid reflux. She is on Nutramigen formula and takes prilosec 3 times per day. I am amazed to find that there is something out there that might be the answer for us...I have been trying to get answers since this problem started. When she stopped eating as much, it was very abrupt so the doctors originally thought it was a tummy bug but now that it has gone on this long, they just say its normal for her. All of the questions that you listed fit her symptoms except she does not scream or fuss when she sees a bottle. She eats 2 oz pretty good and then pulls away and if I try to force the bottle back in her mouth, she fusses big time. So now I wait and let her play for 20-30 minutes and she will eat some more of bottle if I offer it to her again. (This started within the last day or so. Before, she would not eat anymore of it but I was also trying to force feed her and I have stopped doing that).
I was wondering if a MBS is necessary or if I should try the simply thick without going to a speech pathologist? I am worrying about putting her through that test...are they painful and how do they get infants to drink the barium?
Thank you for your help! I am so thankful I found this site...it makes me feel better knowing that my daughter's problem is just that "a problem" and not something to take lightly and hope it will resolve itself. I am going to the pedi on Friday and am taking in copies of those case studies you mentioned...hopefully my doctor will listen.
Tracy
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Sorry I just read another post and you answered my question on the MBS!
Tracy
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I was wondering if a baby who isn't eating well can have good days and bad days with Dysphagia? My daughter eats ok for 2-4 days and then has 2-4 very bad days...could this happen with this condiiton? And my daughter has chronic nasal congestion and spits up mucous...could the latter be a sign of dyspagia too?
Thank you!
Tracy
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Tracy,
The latter could definitely be a sign of dysphagia, but the inconsistency in her trouble eating seems odd. I honestly can't really help you there. It shouldn't be quite that inconsistent though unless she was really sleep during feeds on those days.
From your previous post, you can try the simply thick first if you can't get an MBS, but the MBS gives a really accurate picture of what is going on. Try nectar first and then honey, if that doesn't work, then definitely look into an MBS (which I highly recommend anyway). You said that you already read that there is no pain involved and I've never seen a lo reject the barium yet. Hard to believe, but true!
If you have more questions, let me know!
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This post blows my mind. I struggled with my first son with these exact issues for 15 months. I had no sleep with him for almost a year and a half. My doctor always told me it was teething and just a bad teether, senisitve to pain. Now my second son has the EXACT same symptoms. He is currently 7 months old and your intial post describes him to a t. I have been to see the doctor repeatedly about his chronic congestion. We have tried three different reflux medicines, none worked. I am still up with him throughout the night. I have racked my brain (as I did with my first son) on why he would eat so well at night and not day if it were his teeth. For both sons, I have actually resorted to putting him down for a nap or bedtime then waking him after 15 min to feed him. I feel like calling my pediactrican at home right now and waking her up. I have been up all night for almost 3 years now. I hope this is the answer. I have always felt in my gut that something just wasn't right that it just didn't add up. I requested seeing a pediatric GI specialist but the wait list was 6 months long. I am just venting....sorry. I could be completely wrong but I feel like this is the answer I have been looking for all this time. I am going to push my ped to get the MBS. In the meantime, where to you get the formula thickener? Do you have to have a prescription? Thank you for posting this. I really believe that this is the answer to my prayers.
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Erika
I really hope this is the answer for you! Can you let us know where you stay so someone can try and recommend a formula thickner for you.
Good luck and let us know how you get on with your doctor.
Lauren
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Yes, I live in Houston, Texas, USA. Any help would be so very much appreciated.
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another question for you: do babies with Dysphagia tolerate solids well? my son eats solid really well most of the time and at times will only eat that.
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It certainly isn't atypical that you've had the same issue with both of your lo's as dysphagia tends to run in families. Because you are in the states, simply thick is available to you and you can get it at the website and also find places near you that sell it on the website at http://www.simplythick.com. Some babies have trouble with solids and need baby foods thickened too. Often they do have trouble, but there is no mold, so your lo may do fine with solids. However, if there are some he refuses (like the runnier one like peaches) try thickening them and then see if he'll take them.
Before you spend the money on simply thick, look for a powdered thickener in any drug store (ask the pharmacist there are many different brands). Try thickening to nectar thick first, give it several days and if you see no difference, then try honey thick.
Hopefully, you'll get in for your MBS quickly! Let me know if you have more questions!
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No one near my home sells simplethick but I am giong to order some. I am also going to see a dr. tomorrow. Are there any side effects to the simplethick? Constipation?
Have you heard if going to the smallest size nipple helped (i.e. a preemie nipple size)? I know that with my younger son I have not been able to get him off of the newborn size nipple and he is 7 months. I breastfed my first son so I never had the ability to experiment. Just curious if nipple size has ever seemed helpful.
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Thanks Nancy ;)
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My son always suffered from constipation and the simply thick never made it worse. For babies who have regular bowel movements (i.e. they have never been constipated), it may make the stool a little more firm, but trust me, as constipated as my son was prior to the simply thick, if the product was constipating, Luke would have been miserable.
AS for the nipple size, I honestly can't say I've ever had a preemie nipple, but certainly, sticking with a smaller nipple size will help.
With your son being 7 mos., I would start encouraging a straw cup and get him off the bottle ASAP. Start by plugging one end with your finger and giving him sips and he should figure it out within a short period of time. My DD figured out straws at 5 mos. and though Luke wasn't quite that young, it was well before 1 year with him.
Good luck at the doctor's appt tomorrow!
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Well... she thought I was crazy. And I probably won't be returning to her office ever again. But ultimately I have my referal to a speech therapist and have an appointment on Monday to have his feeding evaluated. I also ordered some simply thick that should arrive tomorrow for me to give a try. Wish me luck!
Some follow up questions. When you were struggling with this how was your son's sleeping habits? Did they improve once the feeding process improved?
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My ds was only 3.5 mos. when he was diagnosed, but there was a sharp change in his sleeping pattern that directly correlated with improvements in his feeding. Prior to getting this figured out, he napped 20-30 minutes max at a stretch, but within a few weeks, he settled easily into a perfect nap routine (1.5-2 hours both a.m. and p.m.) and was sleeping 9-10 hours by 4 months at night (probably would have been longer, but I didn't put him to bed until 10 or so). It could have just been coincidence, but I really always attributed the improvement in sleeping to the improvement in eating.
Sorry the doctor didn't hear you out, but at least you got your feeding consult. Hopefully, you'll be seeing a speech therapist who really has good knowledge of this. Keep me updated with that appt. as well.
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You know this whole this is nothing short of a miracle for me.....not to sound to dramatic but even if he doesn't have dyshpagia...I know it something and I'm not accepting 'teething' as a reason for 18 months. I'm shocked at myself that I did except for my first son. My husband was EXACTLY the same way as an infant and my mother in law told me that his first two years were the hardest thing she's ever done in life. I know we are all so blessed to have beautiful, healthy children. I haven't had near the struggle of some on this post but I have had my struggles with this and literally haven't slept well in 3 years! It has taken it's toll on my marriage, my first son and other relationships in my life. I am confident we are going to get this resolved now. And the really amazing part is that my cousin is a speech therapist and we will be seeing her this weekend at a family reunion. She is going to gladly evaluate his eating. She is not specialized in pediatrics but at least it will be a professional opinion. She is also less likely to blow me off. She lives a good distance away so she has not been entirely aware of my issues with my children. But we grew up together as kids and I trust her and think she will listen sincerely to me. I also have a very dear friend from college who is a speech therapist and has been for 7 years. I have also called her since all this has come up and after listening to the details agreed that swallowing issues were a real possibility. Had I (or my worthless doctor) even thought of this 3 years ago I would have had all kinds of resources to help me. BUT, we are here now and going to get something done this time.
I am also seeing a bigger and bigger protest from my youngest son on the bottle and dreamfeeding is becoming more and more the only way he'll eat. SO, I know we have to fix this now before I do have major problems with his eating.
I mostly wrote to say: Thank you, Thank you, Thank you! I know I should probably keep the sight PC and spiritually neutral but GOD BLESS YOU!
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Wow, that makes me feel good!! :) I'm so glad that in some way this has been helpful for you and I absolutely see how this could effect all of your relationships. It's definitely difficult and hard on your nerves when dealing with something like this. To make things worse, you have an unsympathetic (word?) physician!!! You are certainly lucky to know 2 speech pathologists. I really hope you get some answers to your problems! Again, keep me posted!
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Just keeps getting better.....I got a call back from a different speech pathologist. She was my top choice based on her work at the Texas Children's Hospital feeding center. I was originally told no appt until Sept but they called me today and said they can see me Thursday!!! yeah! I don't even have to wait until monday AND I feel more confident in this lady's background.
NOT ONLY THAT, I received the packet of simply thick that I ordered online today and we are off to a great start! He took 5 oz from a straw cup in a matter of minutes with absolutely no problem, no objections. No coughing, no choking, no thrashing his head back. I tried using it in a bottle at bedtime and didn't have quite as much luck. He took 3 oz rather quickly but then got frustrated again. I think it may have been a flowrate issue because when I changed back to a straw cup he happily drank 3 more oz. Did you use a special bottle? I have a fast flow nipple on there and it seem to flow ok to me. Not sure on that one, but I do know that I have never been able to get him to drink like that AWAKE in his precious little lifetime.
I can't say it enough. Thank you for sharing your experience with the world like this! I will let you know how Thursday goes.
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If it were me and my lo was doing that well with a straw cup and taking that much from it, I would get rid of the bottles and just use the straw cup-that would be my advice. As for the nipple size, you should just stick with the same nipple size that you were using. My son used Avent bottles and we never got beyond a nipple size 2. The thickener will go through the nipple that you were already using, so if you want to try a bottle again, get rid of the fast rate and go back to what you were using!
Sounds like things are really falling into place for you! Hope Thursday goes well!
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Just keeping ya posted: Today was our first appt with speech path. She said his pattern of eating seems to be suck, suck, breath, swallow and that is what is causing his trouble. She said a 'timing' issue with how he's trying to take bottle in. She ordered a MBS to be done and hopefully get that completed in next two weeks. He's only had 3 oz all day. For some reason he's rejecting the thickened straw cup today. Really confusing me! He continues to relatively well on jarred baby food. But interestingly he'll only take that standing up as if eating in a sitting or recline position is not comfortable. Could be just coincendence though. Still kind of a mystery. But I think I'm getting the right help now.
Keep ya posted.
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I would definitely say that you are on the right track. That uncoordinated suck/swallow/breathe pattern is exactly what causes dysphagia in otherwise typical babies, so it makes sense to me. Hang in there and things will straighten out. I'm just really glad you're getting the help you need!! :)
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thank you again. do you know what would be the symptoms if he did have some formula in his lungs? He has been really fussy during the night. He has been waking up crying every 1.5 hr or so for the last several night. Just acting like he feels terrible but no fever, no cough, no visible drainage from nose. really could be teething but not responding to motrin. I did have my ped check him Monday but I've lost a little faith in her judgement.
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Sorry I didn't respond before now, it's been a busy weekend!
It's hard to say how aspiration can affect a little one, but you would probably notice some wheezing/coughing, a stuffy nose/runny nose. I doubt that not sleeping without any other symptoms is a sign of liquid in the airway. Hope it's gotten better since you posted the question and good luck with the doctor tomorrow!
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no problem! He seems fine now other than his usually issues. The thickeners seem to cause him quite a bit of gas so I have backed off a bit. I have his MBS scheduled for Monday. I am so curious to find out what might be going on. Another thing I ahve been thinking about lately is a shortened freduleum (not sure on the spelling) or 'tongue tie'. Curiously, my older son (who also had all of these feeding problems) had one. I was assured early on by my ped that it would not cause a feeding problem. I don't know how to tell if my younger son has one or if it could even possibly be related to what's going on. I did have an appt with a speech pathologist already and she didn't mention anything about it. The biggest thing puzzling me right now is that feeding has always been a problem (since around 8 weeks or so) but at 6 months things took a step change for the worse. I found an article that said infants use their jaws up through 6 months for sucking/swallowing and then their tongues more so for sucking/swallowing after 6 months. So one theory I am kicking around in my head is that it is something to do with him freheum? thingy. Maybe it is not dramatically short but enough to cause discomfort. He does take a pacifier ok. My speech pathologist is out of town for the week so can't ask her just yet. Ever heard anything like this or is my imagination running away from me? Hopefully Monday we'll learn something from the MBS.
Thanks again for keeping up with me!!
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Hello,
I'm wondering if my son might have Dysphagia. Although he weighed in at the 80th percentile at his 8 week appointment, he has always had feeding problems. They seem to be getting much worse (he is now 11 weeks old). I plan to contact my Pediatrician tomorrow to schedule a weigh in, because I suspect his good weight gain may have dropped off.
Here are the details:
We've always had latch issues when nursing, and until recently he has never been able to handle a standard size 1/Newborn nipple (dribbled out of mouth and caused gasping/choking/sputtering), other than Dr. Browns narrow based nipple.
He typically eats 1 - 2.5 ounces comfortably (or nurses for about 5 minutes), then makes a wheezing/gasping sound or just pops off the bottle/breast. After a burp, he is nearly impossible to get back on the bottle/breast, without lots of effort/fussing/waiting.
He continues to act very hungry (bobbing, head butting, flailing, making mouth movements) and eagerly takes the bottle or breast, but spits it out after a second or one swallow. After a few times he becomes frustrated. He won't accept a pacifier or spits it out. This goes on for a while and we either play (daytime) or comfort him back to sleep (nighttime/naptime). When he finally calms down we are sometimes able to get another ounce or so down. Usually 3-4 ounces total, with much cajoling, over the course of an hour or two.
On the rare occasion that he eats more than 4 ounces, he sometimes spits/vomits what seems like the entire bottle (my shirt is drenched, his clothes are drenched, milk in his hair and nose and face).
Random note - may be related - his breath always smells like sourish milk/formula.
Now that he can handle all size 1 nipples, we've tried every bottle/nipple on the market. We've also tried other formula (Gentlease), which was much worse.
He isn't congested at all.
He often naps for 30-45 minutes and then wakes up squirming and kicking (he sleeps on his tummy as will not stay asleep on back at all and acts like a wild beast when swaddled). If he eats or is able to be soothed back to sleep he will sleep another 2 or even 3 hours. He sleeps pretty well at night.
Sorry for all the detail, but I wondered what you thought. I have a very laid back Pediatrician who feels that as long as his weight is good, his eating issue must not be serious. Like I'm just a typical first-time mommy who overreacts to every little thing. Maybe I am! But I just feel like something is not right when my fairly big baby (13+pounds) can't eat more than 3, maybe 4 ounces at a time, never gets the recommended minimum food per day, and acts so frustrated about it!
What do you think?
Thank you!!
Kelly Silva
kellyjsilva@msn.com
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Kelly,
It's impossible for me to diagnose without seeing your lo, however, from your story, if you were a mom who called me at work, I would say bring him in immediately, I would start thickening immediately and we would be scheduling a modified ASAP. Your story sounds nearly exactly like my son when he was that young (except he was congested on and off, but not all the time). he was also a very big baby so it took a long time until his weight gain finally started trimming back. Honestly, there are too many pediatricians who take a "wait and see" approach, not only with feeding issues, but with other delays as well (IMHO), I would be very persistent about this and get a referral to see a speech therapist and to have a modified barium swallow (NOT a barium swallow). You could try thickening now if you wanted to. I absolutely recommend simply thick, but in the meantime, until you have more info, try the powdered thickeners you can find at any drugstore (thick and easy, thick-it, thicken-up, etc.) and try thickening to nectar consistency and give it a few days and then, if you don't notice a difference, try the honey thick. Keep in mind, it may take a few days for him to catch on to use of the thickener and DO NOT change nipples or make the opening larger. Try this, and see if it helps and let me know if you have more questions.
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I just wanted to let you know that we got our son in to see the Pediatrician today, after talking to the nurse on the telephone about our feeding issues. Our son is still gaining weight at just the right rate. However, we stressed that it is a big "to do" to get him to eat the 21 ounces a day that he currently consumes. Our Dr. agrees that is probably a fairly mild Dysphagia problem and has put us on thickener. If that doesn't help, he suggested we see a speech therapist for a swallow test. I was so pleasantly surprised that he agreed with what we've been suspecting and the advice you gave me, as I was expecting him to dismiss our concerns due to the healthy weight gain. I always find that "been there done that" Moms are much more helpful than Pediatricians, so I was delighted that he concurred.
We're thickening with rice cereal until we can get Simply Thick. My question is regarding nipple. You said to just stick with the same nipple he's been using? It's a size 1 Dr. Brown's. Or should I switch to the x shaped nipples meant for cereal? Not sure.
Thank you SO much for your help. If I hadn't happened upon this thread I would still be thinking "I guess he's not hungry?" and crying with frustration because I knew something wasn't quite right and was at a loss to read his signals (hungry, but won't eat). I don't know if I would have called the Dr. at all, and if I had I wouldn't have known exactly what to point out as being "not quite right" and probably would have gotten a diagnosis of reflux or gas or just normal fussy baby behavior.
Thank you!
Kelly Silva
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Wow, Kelly, that's good news!!! Regarding the thickener, for cereal, you probably have to use the x-cut, but when you start the simply thick, just use the nipple you were already using (I think the Dr. Brown's #1 is what you said), you shouldn't have any difficulty with that, if so, try the #2, but definitely, no cross-cuts. Hope you see results and let me know how it's going!
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Hi Nancy! I am so glad to see you've helped another mom. I wanted to let you know the results of my lo MBS. They found that he had a 'weakness' in his anterior to posterior tongue motion (starting from the back of his tongue). I haven't received the written report yet but she did give a specific name to it (which I will follow up and post again). She said this weakness was causing his suck to be disorganized, liquids to pool and approach his airway and tongue fatigue. She did also say that in conjunction with this she thought there was also significant reflux going on. She said that lots of infants with swallowing problems also have reflux. Not sure the connection there. But we will be seeing a GI specialist in Sept. In the meantime, I am going to try him on Prolisec (only med we haven't tried yet). We are also going to take him to therapy once a week with a ped speech pathologist to help him with the 'weakness' in his tongue.
Hi Kelly! Wanted to say hang in there and also to possible consider a trial on reflux med just to see if it helps. May not be the main problem but as my speech path put it...could help minimize any other issues around eating.
Thanks again so much Nancy! What a wonderful resource you've been. I truly would not have come this far without your support!
Last question on using simple thick, is there any technique to mixing it that minimizes air bubbles. It is making my lo so gassy. Did you experience that? I can see how much air is trapped in the solution but can't figure out how to get rid of it before feeding him.
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Erika,
Sounds like the are talking about oral-motor weakness, either way, it sounds like you are on the right track!!! As for the bubbles, I always made up formula way ahead of time. I bought the simply thick in the bulk packets and pre made 32 oz of formula in an Eddie Bauer water container (from Target) and then poured that into the bottles as needed. You could do the same using small packets, just use one for every four oz. of formula, then it is settled before you give it to your lo and there are no bubbles. When Luke was between 1 and 2 and no longer took formula, I premade 32 oz. of water/ milk/ juice and just poured it and used it as needed. HTH. :)
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Thanks again Nancy. I did get the written report from the speech path today. She stated that she observed 'mild oropharyngeal dysphagia' with flash laryngeal penetration, no tracheal aspiration. Also stated he demonstrated ' reduced secondary to reduced anterior-posterior tongue movement and tongue cupping'. and of course just the general 'discoordinated sucking pattern'. I will be seeing a speech path on a weekly basis to help with the tongue 'weakness'. And will continue with the thickners. I can't believe I know all that I know now. I struggle for so long with our first son (who by the way is named Luke) :) I feel so amazed that I came across this. I am so angry at our 'ex'-pediatrician. I'm trying not to be because it seems this is uncommon but I feel like she just blew me off. I usually consider myself a strong person and can't believe I tolerated being treated the way that I was for so long. Well, it's in the past and thank goodness our son Sam has the help he needs. And Luke is fine now and wonderful and perfect and that's all that truly matters in the end. You really have helped our entire family, Nancy. Thanks. Ok, I'll stop now! :)
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WOW- what amazing timing. My 8 week old (11 lb) JUSt started to get fussy while eating about 3 days ago. He starts to CRY about halfway through the bottle (around 2-2.5 oz) It's obvious he's still hungry, but will wail once I put the bottle in his mouth. I thought it might be b/c he's tired (we're having trouble taking a full nap- just like Kelly, he wakes up after 45 minutes during the day). I can get him to drink the rest by rocking him. This doesn't happen all the time, though. This morning, he was awake, not sleepy, and took over 4 oz just fine.
I have my peds appt on Tuesday. Any thoughts?
Jill
Clarapist@aol.com
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Even though it isn't happening all of the time, I would definitely still ask your ped. for a referral to have it checked out and that way you can determine what is going on. He shows some signs it sounds like, so it's worth looking into! Let me know if you have more questions.................
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Well, went to the pedi yesterday and she was like "I've never had a "normal" baby with dysphagia. His gag reflex is fine, etc. He miht have some reflux, so she suggested putting him upright to sleep for awhile. I have mixed thoughts. He doesn't do it every time (maybe 1 feeding out of 7-8). Did your LO cry with every feeding?
Jill
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What a typical response for a pediatrician. I know that many of them have not had this with normal babies, but it exists and I see it on a regular basis in my practice!!! It's just frustrating, because to be honest, I'm certain he/she has had a "typical" baby with dysphagia and it just went misdiagnosed.
To answer your question, yes my little one cried for most feeds with the exception of when he was really tired. However, every baby is different. Some babies don't cry, them may take lots of breaks or have signs of respiratory issues, but those may be the only signs of dysphagia. I evaluated a lo last week whose only sign was pneumonia (not to say "only sign", but it's pretty amazing that some of these little ones are letting liquid into their airway and not fighting it), but other than that she's "typical". So, use your best judgement, but a normal gag reflex doesn't really indicate anything...............................
Let me know if you have more questions!
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Hi, i do have 2 more ?s-- I'm a physical therapist (treat peds and neuro) so I know the lingo.
When you say congestion- do you mean nasal or chest?
Also, does this essentially mean that your LO was silently aspirating??
THANKS
Jill
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A little one could be congested either way. I could always hear Luke's congestion nasally, but some also have signs of chest congeston and and some even have enough chest congestion that they are being treated with medications and breathing treatments for asthma. My doctor never heard anything in Luke's lungs and I never really noticed any other signs, but some mom's claim they don't necessarily even see signs of chest congestion, but that the doctor can hear it. That seems a bit odd to me, but I have definitely heard that a couple of times.
In Luke's case, he was actually aspirating, but quite often these symptoms can result from simply penetrating the airway with the liquids (meaning the liquid starts to enter the airway and then comes back out). However, after enough penetration, some liquid is bound to get in the lungs and cause problems and just the feeling of that is very uncomfortable for many little ones, because although the airway is not being totally compromised, it still feels as if it is to them. No one likes to feel anything foreign going into their airway.
Does this help you? I hope I didn't get too wordy. How are things going with your lo?
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Not too wordy. That makes perfect sense. Connor tends to have nasal congestion during feeds. I'm trying to determine if it correlates with his fussiness (only happened one time yesterday).
I actually emailed Debra Beckman (are you familiar with her, she's "famous" in the oral motor world,apparently). She lives here in Orlando, where I do. I hope she responds!
The fussiness during eating is better- now am dealing with 45 minute naps and HORRIBLE moaning overnight (Gas? Reflux?)
Last night he was MOANING and very restless b/n 3-5am. Everytime he would break his swaddle, I'd reswaddle, but for the most part, his eyes were closed. I fed him at 5:30 (after his first night feeding at 2:30 am), and after that, his moaning stopped and he went right back to sleep.
I elevated his mattress last night just in case he does have some reflux. Not sure if it made any difference.
In any case, after that 5:30 feeding, he slept till 8:30! (Our usual start time is 7:30 but heck if I was going to wake him!)
I know I'm adding more variables to this post. :)
Jill
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Hi Jill! I am a mom who has had the exact experience. My son's difficulty in eating started at 8 weeks also. The issues you described couldn't be more familiar. You can read that I've posted several times with the same frustrations. I wanted to let you know that my son had both reflux (confirmed with an upper GI at 10 weeks) and dsyphagia (confirmed with an MBS at 7 months). We are still battling it though things have gotten much much better since the dsyphagia was diagnosed and we responded accordingly. I can say I've had lots of friends that had luck with low doses of PPI medications for reflux. I am no doctor or therapist of any kind but both my children have had these symptoms and here are my thoughts of what we experience. I believe that my son had difficulty eating because of the dsyphagia that started around 8 weeks and got worse again at 6 months as his sucking pattern changed and the increase in calorie demand. In fact, he was much like your lo in that up until 6 months, he would only fuss about half of the time. After 6 months, he fussed every feeding. I believe the difficulty during eating is due to his dsyphagia. However, I believe the short naps, nightwakings, gas pains and general discomfort a while AFTER our son's eating is his reflux. I'm not sure if his chronic nasal congestion was due to reflux or dsyphagia but I can say that it is dissappeared in the last month. Could be totally different for your case, I just wanted to chime in with my experience as I know how difficult this can be. I have one friend who caught her daughter's problems early and with a combination of a low dose of prolisec and thickners solved her eating problems almost entirely. I haven't been that lucky to find such a clear solution but I wanted to let you know of it.
Good luck with everything.....
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Hello,
I haven't posted in a while. I strongly suspect my lo Nicholas (now 4 months) has dysphagia. We have been thickening his formula since he was about 11 weeks old.
I just feel the need to vent. Hope that's okay. We had a four month check up yesterday and he weighs 16 pounds 3 ounces - 75th percentile for both height and weight. So he's gaining weight, yay. But the bad news is that feeding him is still an almost constant struggle. We thicken his formula - sometimes he is able to eat well, other times he eats a few ounces. Then fusses and acts hungry and seems to have a lot of difficulty continuing to eat. He grabs the nipple eagerly with his mouth, but then a second later his hands push the bottle away and he fusses. It's so frustrating to see our little guy struggle. The doctor is mildly helpful, basically just assuring us the "whatever we are doing seems to be working" since his weight gain is good and he is healthy and good natured. Of course, he isn't there for feedings, which are almost always a problem. He still doesn't eat the recommended minimum a day and I believe that the lack of fullness affects his sleep and mood.
My question for anyone who is reading is about solids. I'm eager to start spoon feeding, hoping that he'll do well with more solid food and be able to fill up for ONCE. What have been others' experiences with starting solids? Should I do anything special due to his dysphagia?
Is there anything else I can do to help him other than thicken his formula?
I'm just praying he'll outgrow this as it is such a constant worry and so distressing at times. Then other times he'll finish a whole bottle and I'll think I'm overreacting.
Thanks for reading...
Kelly
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Kelly,
I hadn't heard from you in so long that I had to go back and read your initial post, which also tells me that, if you're still having a problem, maybe you need to try to change some things. First of all, your lo may need even thicker liquids. If you're doing nectar, try honey and if you can, try to have a modified barium swallow test completed. If you are still having trouble this test is absolutely warranted at this point. I absolutely understand how you feel, Luke was always a big baby too and so to the Dr's it wasn't too worrisome, but to anyone who fed him, well, we were about to lose our minds.
If your lo is 4 mos., go ahead and introduce some solids, for 2 reasons. One, because he isn't get as much calories from food, this will help (though you still need help to get him to take the bottle) and two, if he's a formula baby, they often do start solids at 4 mos. What you need to do though, is just skip stage 1 foods and go to stage 2 foods. Stage 2 is already thicker which helps, however, some are still runny (e.g. peaches) and you will still want to thicken them either with rice cereal or with a powdered liquid thickener from the drug store. They are able to better control solids coming from the spoon, however, once they mix with saliva, they become thinner and they can have some difficulty. It should be a really smooth process though as long as you thicken them up a little bit.
Please feel free to vent! I totally understand the frustration and anxiety this can cause! Ufortunately, I'll be out of town from Thurs-Sun, but if you have more questions, I"ll try to get back to you ASAP! Good luck and hang in there!
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Kelly, we had the exact same experience. The thickners helped but didn't solve our problem entirely. Once we completed the MBS we found out that our son had an oral-motor weakness that was causing his dsyphagia. So he would tire out and get frustrated often even with the thickners. Nectar level helped with the dsyphagia but we have also been doing tongue exercises and weekly speech therapy to help strengthen his tongue. Our son does also have a tongue tie which in retrospect we should have clipped as a newborn. We didn't know he had one or that it was contributing to his problems until 6 months age. Just ignorant parents! Anyhow, we had three fold issues going on 1) Dsyphagia 2) motor oral weakness (causing dsyphagia) and 3) reflux. So the thickners were only part of our answer (a big help though!) If you can have him evaluated by a speech path or even do the MBS you might get more answers. Within 30 days of getting the MBS and starting the speech therapy our eating frustration were minimal compared to what it was.
As far as solids, we did start at 4 months too. It did help him get more calories that he needed. He took to the solids really well (and still prefers them to this day :) )
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Gosh there is a god, I am so thankful to have found this thread, any help would be greatly appreciated.
I fight with my child so badly to feed. He was born tiny at 6lb 5.5oz (2.88kgs) and now weighs 5.29kgs at 18 weeks. He has continued to gain weight but is dropping on the percentile charts rapidly and now sits well under 5 when he started on the 25th. Tomorrow he is 20 weeks old and the paedatrician is putting us into hospital to monitor his feeding and do some testing. I just can't wait to get to the bottom of this. Summer coming on I am worried he will get dehydrated and because he is still so small for his age if he gets sick he has nothing too loose.
I wanted to continue breastfeeding but he forced me to stop. At around 8/9 weeks he started to refuse the breast. At 4 weeks he was diagnosed with Reflux and is on medication. I continued to express for 4 weeks till he reached roughly 13 weeks, but with 2 hourly feeding this was becoming very time consuming.
He didn't appear to refuse the breastmilk in the bottle, although when on the boob always pulled off but assumed this was due to fast flow or his reflux.
Anyway they thought he had Cows Milk Protein Intolerance due to his explosive poos, they were froffy and green chunky at times. The only reason why I agreed that this was a possibility was that when I put him on formula he had a upset tummy all the next day (and it was on Cows Milk). So then we went onto a prescription formula (Neocate), he was ok on this for a couple of weeks then he just start drinking like he wanted it and then pushing it away continuously. He is so strong, it is like he has a temper with it. I was always lucky to get 60mls down his throat on a 3 hourly routine and that was pretty well forced, it was like 20-30 ml was always enough (just a top up to quench his thirst). But in saying that some feeds are better.
He does feed alot better when he is sleepy hence I would do alot of roll around feeds. Like when he was on my boob the night feeds were always quite easy. So now he is on formula his last feed of the night I am able to get alot down and I believe this is the only reason he has continued to gain weight.
He does seem to come off and gag/cough or splutter at times on the bottle. And he just seems to throw up sooo much and it all comes up with little burps.
Hopefully tomorrow we will find some answers as it is so upsetting not to be able to feed your baby.
Any advice in the meantime would be greatly appreciated. Do you think it is this condition you are all talking about?
Sheree :'(
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Hi Sheree,
Good LUCK in the hospital. SO sorry you're having to go through this. I'm not an expert, but here's my 2 cents: Make sure that you ask them to do a Modified Barium Swallow test. That is the test that can show dysphagia. (They might try to do an upper GI but try to get an MBS too.) Also, see if there are any Speech Therapists in the hospital that specialize in feeding to evaluate his oral motor coordination while eating. (Or, could be Occupational Therapist in Australia- just depends on the hospital.)
Another idea is to see how he does when the formula is thickened. (Though, that's also a remedy for reflux, but HEY if he has both, then it might help 2-fold!)
Many hugs to you. Let us know how it goes.
Jill
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Sheree,
Jill gave you great advice. Since your physician is sending you to the hospital for this, if they don't already plan to do a modified barium swallow, I would absolutely ask for one. An upper GI, in addiition, will look for reflux and certainly these 2 things (i.e. dysphagia/reflux) do coincide, but I would definitely be firm about wanting a modified barium swallow. Let us know how things go tomorrow, I'll say a little prayer that things get better for you! Let us know if you have more questions!
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Sheree, I can't add any more great input than what's already been posted....but I will pray! I know the difficulties you are facing. My son was born 6 lb 10 oz, 25th percentile...dropped below 10 percentile by 6 months....but happy to report ..much thanks to Nancy...that the MBS we had done at 7 months gave us the info we needed to address his problems....we are now (just had 9 mo check up today) back up to 25th percentile! Our feeding struggles are minimal now and he has settled into a better sleeping pattern. Getting the MBS done was key for us. Sounds like you are doing exactly the right thing by getting some tests done at the hospital and having his eating evaluated.
Everyone on this thread has been so wonderful and supportive and so thank again to Y'all!
Good luck, Sheree! God Bless!
Erika
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I just wanted to say that my daughter is finally getting into a pediactric specialist tomorrow morning (they said they were booked until december? anyway...) Im hoping that helps some of my daughters eating issues. Wish me luck!
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Wondering if our little man could be suffering something similar to this. Ever since he was feeding he would latch and eat for a little while and then get fussy and start to pull his head to the side and let out a little cry. He is on formula now and does the same thing with the bottle, latches on and eats for about 2 oz and then pulls his head to the side and get fussy. We can usually shshsh him or try to burp him but he sometimes wont even eat a 3-4 oz bottle at 4 months. Looking at a lot of othe posts it seems that similar age kids are eating more and less often. He has been on acid reflux meds but we usually end up taking him off them as he doesnt seem better or worse with or without them. Also he seems to want to be held upright especially when eating and after eating. He does most of he heavy eating during the middle of the night and only lightly eats during the day.
Here is a sample of his eating schedule.
Also we tried the DB stage 2 nipples and he ate very well with them but would spit up almost half the bottle after every feeding so we moved back to stage 1 nipples.
any advise would be appreciated.
4 1/2 months old (14pounds)
6 PM Bathtime rutine
6:30 PM Bed time
Feeding 5 oz
9:30 - 10 PM Bottle Feeding 3-4 oz
12:30 AM Bottle Feeding 3-4 oz
2:30 - 3 AM Bottle Feeding 3-4 oz
5 AM Wide Awake, Play time and tummy time with Daddy (20-30mins)
5:30 AM Sleep sometimes in swing
8 - 8:30 AM Awake
9-10 AM Bottle Feeding 3-4 oz
10 - 10:30 AM Short Nap 20-30 mins
10:30 - 12 Play time
Noon Bottle Feeding 4 oz
12 - 3 PM Play time
3pm -3:30 pm Nap time 20-30 mins
4 PM Bottle 3-4 oz
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It definitely sounds like he could be having swallowing issues. He is loading up on calories at night when it's easier for him to eat (most of these lo's will eat better when sleepy). If you can, talk to your doc and/or a local peds speech therapist and see if you can set something up. In the meantime, stick with the smallest nipple size. If you can't get anywhere with a physician or speech therapist we can discuss other options then. The sooner this is remedied (if it is dysphagia) the better so it doesn't evolve into other issues. Have you tried solids yet? If so, how's it going? It's entirely normal and quite common to have reflux and dysphagia. Both of my lo's had significant reflux, but the meds did nothing for either of them. Let me know if you have more questions or if I didn't answer one you wanted me too!
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SFamily-- that sounds EXACTLY like my LO from 8 weeks on. We did go to a speech therapist (I am friends with her, as I'm a Physical THerapist in the same hospital) and she actually thought it was reflux. I was still convinced that it might be a combo of reflux/dysphagia, but b/c he wasn't having ANY problems with weight gain (16 lbs at 6mo) I didn't push it. In any case, definitely try to get an eval from a Speech Therapist and you can try to get a swallow study to at least rule it out. (Swallow Studies are NON-invasive: baby just eats/drinks different liquids that have barium mixed in and then you can see the swallow on a moving Xray. It will show if it's going the right or wrong way. Are you in the UK or the USA?
Anyhow, what was the AMAZING remedy for us was putting Simply Thick in his bottles. You can order a trial pack at www.Simplythick.com ($10 for a trial). I didn't thicken as thick as the instructions, but did 1/2 thick (ie with a nectar thick packet, instead of 4 oz for one packet, I mixed with 8oz.) If you are in the UK, I am not sure if the will ship it to you. If not, you could do rice cereal in the bottle to thicken, though it can make baby consitpated. We used a level 2 nipple with the thickened formula. We also had Connor on Prevacid, which I thought wasn't helping, but when I took him off of it, he got worse.
PM or email me if you have any other questions. At 6mo, we weaned Connor off of the Prevacid and also off the thickened feeds and he's GREAT now at 9mo (today!)
HTH
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Great and thank you for the advice we are taking our little man to his Ped today and hopefully will get some help. We had stopped the Axid without the doctors notification as we noticied he was starting to eat fairly well a month ago and i am wondering if it has a cumilitive effect or does it just work for the daily dose. either way we restarted the Axid a few days ago and he might be getting a littl better but its hard to tell...
He is on my lap right now and finished a 5 oz bottle without much spitting up at least for now.
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Let me know how it went a the ped-- I mistyped above-- Connor was 16 pounds at 4 months, and 19 at 6. He's now 22.5 at 9mo. (Oh my aching biceps!!)
Jill
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Hope your visit to the pediatrician went well!
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We met our Pediatrician on Friday and she reviewed our LO feeding and sleeping charts and listened to our explanation of being a fussy eater during the day. The pediatrician doesn't believe that our LO has any of the issues we discussed; Acid reflux or Dysphagia and told us we can discontinue using Axid and that his growth rates and eating levels are normal for his age. She things his day night schedule is off and that is why he is mainly eating at night and not during the day. She suggested feeding him in a calm environment without much stimulation. He is eating about 25 to 30 oz per 24 period and his weight and growth was around the 40 percentile. The questions that she asked us were around his fussiness and unwilling to eat. He does get fuss on the bottle after 1-2 oz and sometimes will finish a 4 oz bottle if given in 2,3 feeding over a 1 hour period. he gets fussy laying down while eating and is much happier when put in an upright position. Unfortunately feeding him while he is standing is problematic and difficult. Also the Pediatrician wanted us to stop any rice cereal addition for another 1 month and start again at 5.5 months. We didnt totally agree with the Pedestrian and have continued using the Axid and we are considering trying to add some thickener to his bottles to see if that helps. Any suggestions or other observations?
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I'm sorry about your appt, this is when I get frustrated though. >:( Your lo is truly showing signs of dysphagia in my book. His eating patterns are off and he eats throughout the night because he's learned that it feels better at those times. Without a doubt, his height/weight looks great, I couldn't agree more. However, he is really showing classic signs of dysphagia/reflux. Eating better at night, fussing after 1-2 oz. and taking an hour to eat up to 4 oz., wanting to be upright for feeds-these are all signs. Plus, his age is another factor, generally at the 3/4 month mark, the signs become more evident. I also would continue the meds, IF you think they are helping and you can try a couple of things for feeding. One, you can try to change his position-he's older now and certainly may fight you on this, but you can try.........lying him on his side with his feet toward your stomach and his head at your knees, support his neck and hold the bottle like a dart and see if this helps. The reason this may help, is that when liquid starts to get difficult to manage, rather than gravity continuing to force it back, he's on his side so it will either pocket in his cheek if he can't handle it, or roll out the side of his mouth (so, maybe lie a burp cloth under his head); if he's unwilling to do this (and you can't see a therapist) I would go ahead and try to thicken. I certainly can't promise you anything, but it's worth a shot. I always recommend the Simply Thick, it's expensive, but so great (you've probably already "heard" me talk about it) or try Thick-It or one of the powdered thickeners. Start with nectar, see how that works and then maybe bump to honey. If you still don't see results, you really need to insist on a swallow study. Just a word of warning, the thickeners can cause probs. with bowel movements, sometimes diahrrea, sometimes constipation, and no matter what it will change the consistency of his BM's. The powdered thickeners tend to be worse than the Simply Thick, but the benefits outweigh the risks here. Let me know if I can be of more help, I'm always available for questions! Oh, when you start solids, if you have trouble, please let me know that too!
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Thank you so much, Luke-n-me, for this. This is my baby!, minus the congestion, too. I still wonder if I fought too hard starting at six weeks--when I switched exclusively to bottles--to get her to drink more and more, and I possibly did do this. So perhaps part of my problem is bottle aversion due to that, but but but, I am taking this stuff to my Dr. and asking for the modified barium test.
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I'm glad that you found this info and I hope you get some help. I really don't think you could have "done" this to your lo. Humans/babies want to eat by nature and for survival, they aren't going to refuse unless there safety is being compromised. Switching from breast to bottle could always create nipple confusion for some too, but this is definitely worth looking into if the symptoms sound familiar! Good luck!
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Good point. I actually made a Dr. appt. for today, then canceled this a.m. because my LO ate more yesterday than in a long time.
(And I figured that I had better be able to say that she only ate a few oz. at each feed for the Dr. to take me seriously. However, he still won't take me seriously because since 8 wks. [when Dr. told me she was fine--only make her eat what she wants to, so I figured, this is my problem], I have tricked her into eating by placing her beneath her activity center, letting her bat at the toys, and then feeding her. It was weird--as though she didn't even really know she was eating, but once she did, she screamed until the bottle was out! Also, I tricked her, too, by feeding her when she was sleeping--big symptom.)
After reading your post, I made these changes yesterday: held her nearly upright for the feed (rather than tilting her back in cradle position) and used a smaller nipple. Still, she's 18 lbs., and only ate 25 oz.--10 of which were in the p.m. after I had rocked her to a near-sleeping state, so my problem isn't solved, is it? Do you think I had better reschedule that appt?
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How old is your lo? I would go ahead and try to reschedule the appt. There is no point in continuing to let this go on. Hopefully your dr. will be open to checking this out. Is your lo on solids yet? If so, how is that going?
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well just an update on our little man. We talked to our Pediatrician last month at our 4 month appointment and she didnt seem very informed about Dysphagia in infants and checked his weight and talked to us about his eating and sleeping schedule. After all that she informed us that everything seemed just fine and we were not to be worried about our LO. I had already ordered some simplythick samples at this time but we decided that our lO was ok and have just continued feeding him normally. This last week at 5.5 months old he really started to get fussy while eating during the day and pulled away and even cried when he started to feed. As soon as you take the bottle away from him he becomes happy and smile again. We also started feeding him rice cereal this week and he loves the food and eats 2 tsp at night and loves it, but still shy's away from the bottle. We finally decided to try the simply thick today and added one packet this morning to a 6 oz bottle and the little guy finished the entire bottle with very little fussiness. We had to cut the tip of the nipple a bit to get any flow out of it but it certainly appears that it might have helped him. We are going to try the rest of the thickener this weekend and see how he does eating it. Also I have started to call pediatricians in the area to find any that have treated or tested for dysphagia. We don't want to self diagnose our LO but he seems to have a lot of the symptoms previously mentioned and we would love for him to be happier about eating from the bottle.
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Sugarmama here again. My LO is 21 wks old. Plus, I bought a scale today to get a more current weight on her. She is actually over 19 lbs.! Yesterday, she ate only 23 oz., and I don't think this is really filling her, as she woke at 4 am. She won't eat when she wakes, persay, perhaps a few oz., so my DH and I started giving her the paci, oh, when she was 3 mo. for the NW's.
You're right-I will reschedule the appt. Monday.
I had a few more ?s for you: Are hiccups, frequent sneezing, periodic hack-like coughs or periodic quick, choke-like coughs related at all to this problem?
Thank you.
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Well, had Dr. appt. today. He was VERY reluctant, due to her healthy weight, to do anything. I tried to tell him: we feed her when she's basically sleeping and we almost force her to eat we insist so much that she take a little more and a little more. We do this 1) because we have been trying to keep her weight up and 2) because she really seems to sleep better if she's eaten better during the day.
He would not give me an order for an MBSS. Finally, though. he gave me a referral to see a ped. gastroenterologist and said I'd have to start there. So, we'll see.
I really do hope it's nothing. I have to say, though, I'm worn out with the constant offering of food for an hour and a half before each sleep period, you know?
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I forgot my questions!
Luke-n-me, I am wondering, when did you LO's night sleeping seem to be affected by his lack of eating? Strangely enough, Josie sleeps pretty darn well at night--if we do a DF (granted, she'll only drink between 0-4 oz., usually 2), she'll sleep until 4-6 a.m.
Also, how many oz. did your baby drink once he accepted the thickened bottles in a week's time?
My Dr. kept trying to say, yours is a healthy baby--a healthy weight; therefore, we have no problem. However, I couldn't attribute her weight to her chosen oz. intake. This is because my DH and I were--up until last week--feeding her beneath a toy bar to draw her attention away from the bottle--which seriously upped her intake; and we were feeding her the last p.m. bottle after I had practically rocked her to sleep; and, of course, the DF. We continue to do the last two to ensure a good night's sleep. So who know what her weight would be if we let her eat--awake--only what she wants?
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We decided on Friday to consult with another pediatrician who seems to have some experience treating dysphagia our current Pediatrician barely could spell it...(well actually I can't either...but)
We have an appointment tomorrow with the alternative Pediatrician where we hope to get a referral to get a barium swallow test done.
5 months and 3 weeks old.
On Friday 5/4 we started adding Simply thick to his day time bottles only..since we only had a trial kit and a few samples. His normal daytime bottle would be anywhere from 2 - 4 oz usually forced on him over 1 hour to 1 hour and 1/2. Since we have given him the simply thick bottle during the day he is consistently eating 6 oz @ 8 AM, Noon, and 4 PM. He is taking the bottle normally 3-4 oz and then the other 2 oz in about 20 mins after a burp or two and some time off the bottle.
At night we are giving him un-thickened bottles (only because we do not have enough thickener) and he is taking 4-6 oz @ 7:30 PM, 11 PM and 3 AM.
Before using the thickener he was eating about 18 - 20 oz while sleeping and 6-7 oz during the day. Now he seems to be about 18 oz thickened during the day and 15 - 18 @ night unthickened.
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Wow! Sorry ladies, I didn't get notification of your messages from May 4th at all and just got your messages today. Hopefully, I'll cover all of your questions, if not post it again............
Sfamily, I'm glad that you did some homework to find a physician who may help you. I totally understand that you don't want to self diagnose, and I don't necessarily recommend it, however, if you aren't getting any help from the dr.'s it doesn't hurt to try and it sounds like you're having success! When you are able also thicken at night. Although your lo takes the feed okay, it's still compromising the airway. Also, please don't cut all of your nipples, your lo really should be able to get the liquid through a regular nipple even if he plays with it a little at first. Either way, I'm glad it's going well.
Sugarmama, the hiccups/sneezing, hacking coughing, choking coughing are all classic signs of dysphagia. I'm glad you got your referral for the pediatric GI, he/she should be willing to refer you for the MBSS, that's where I finally got some help. As far as Luke's night sleeping, I don't honestly think it was majorly affected by any of this, however, he was only 4 weeks when the whole feeding nightmare began and 13/14 weeks when we started to thicken, so he was pretty young. However, he also tanked up at that last feed in the evening and I think that is helpful.
Sounds like things are headed in the right direction for you both. Keep me updated and let me know if I can be of more help!
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does anyone in know if these thickening powders / gels are available in uk? I'm willing to try anything to get my boy to take milk.
Mel
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Good news... We have gotten our new pediatrician to refer us to a radiology lab to perform a Upper GI and fluoroscopy Barium test. Hopefully this will finally determine if our LO has been suffering from Dysphagia or reflux or something else. This Pediatrician also doesn't think our LO has dysphagia from his eating patterns but again until you see the little guy get so frustrated over eating a unthickened bottle during the daytime I think its had to gain the right perspective. She suggested using rice cereal in his bottles to thicken it but for now we are going to continue with simplythick.
Interesting enough we stopped giving him Axid last Friday at the same time we started giving him the trial dose of SimplyThick. He has barely spit up more then 1/4 cup since Friday which is a remarkable difference compared to earlier. We have also increased his rice cereal intake to 4 tsp per day. Not sure if any of this is helping or all is helping at the same time but he really seems to be so much happier and eating heavy during the day. Yesterday he had about 36 oz of formula in a 24 hour period and today i made 40oz with my recently received simplythick. Today will be his first 24 hour period eating thickened formula and I will let you know how things go.
On another note we are a little worried that the simplythick has not been tested with infants and could inhibit some of his nutrient uptake from the formula? any idea? I am going to send an email to simplythick today also and will post their response if they do respond.
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That's really great news, make sure to let me know when the tests are scheduled and how it goes. Your pediatrician may not think that it sounds like he has dysphagia, but as a professional who works with this on a regular basis, I wouldn't have told you it sounded like dysphagia if it didn't! I'm not a huge fan of thickening with cereal, mainly because you can't get cereal through a regular nipple meaning you have to make them larger or use cross-cuts. If you do this, you're kind of making the whole point of thickening moot. To thicken and then make the larger nipple basically like leaving it thin liquid and staying with what you have. You also cannot get cereal to thicken the liquid uniformly. You will have some thickened formula and some runny. That's my opinion on that.
As for you question on Simply Thick, I've had a nutritionist/pharmacist with the Ohio State University look into if it blocks nutrient absorption. Her reply was that over a huge period of time it may deplete a small amount of a few nutrients (I forget which ones off the top of my head, but I believe there were 3), but the benefits of unsing the thickener far outweighed the the minimal amount of nutrient absorption that may or may not occur. The only other option is to try feeding in different positions and giving frequent breaks from the bottle during the feed (not meaning let him eat 2 oz. and then 20 minutes later take 2 more and so on, what I mean is let him suck 10 times, more or less, and then take the bottle out and keep doing this throughout the feed). That's the other option, well...........or try side-lying or sitting completely upright with the frequent breaks(sorry, I'm rambling).
Glad to hear things are going well. Just using the thickener alone will also decrease reflux and keep things down. Once I started thickening Luke's formula, not only did the swallowing problem disappear, so did his reflux!
Keep me informed!
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OK its me again. So we have had a few full days on SimplyThick and I also called the company and spoke with some great people about infant studies and any issues that our LO might have with it. If you have question call or email the company they were very responsive.
Some questions and observations that i forgot to ask ST:
Our little one seems to have many more bowl movements then pre-ST. He was always a once a day pooper and is now going 2 to 3 times a day with a very yellow mustard type appearance. Is this normal when adding ST to their bottles ?
Twice this week he has thrown up his complete bottle after eating 5.5 to 6.5 oz? We are actually using a Y cut nipple as the standard level 2 nipple didn't seem to give him the ability to flow the ST formula.
Thanks for all the advise,
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I don't have many people complain about changes in stools after using the simply thick, but it's certainly possible. And I say I don't have MANY, but I do have few. For some it's more constipating and for some it creates full-fledged diahrrea, but in most cases it's tolerable. So, yes, I think it's probably normal for the changes to be occuring.
I'm not certain why he would throw up complete bottles, is this still occurring? Unless he has a weak suck , he should be able to get the ST through a regular nipple. The Y cut may be causing too much/too fast and hence the refluxing. I only recommend a Y or X cut for babies who can't suck strong enough to extract liquid and typically these babies have low-tone otherwise. Do you see that in your lo? Hopefully things will continue to get better, let me know if you have more questions!
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Hello, I am new to this forum, and so have not read every post, but I just wanted to say what a relief it has been this past half hour to read about this problem and know that this is what my DD must have been (midly) suffering from. She is now 5 months, but at 3 months I went through 3-4 weeks of many of these sympotoms.. mostly the screaming at the breast, arching away from the breast and bottle, only feeding at night, wanting to feed upright, gagging, choking, hiccuping a lot etc etc. The DR couldn't work out what was wrong so in the end when she wouldn't take the breast milk from me or a bottle I gave her a bottle of formula and what do you know we have been fine ever since. Have been through all the questions re the breats milk and nothing seemed to answer my questions. So clearly a very, very mild case, but thank you for helping me realise it wasn't something I was doing wrong!
All the best to those Mum's out there who are suffering with their little one's.
Take care
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Nikkivdm,
I am wondering about my DD. She too hiccups, arches, etc. But so far we have decided not to go through the testing, as she still gains weight. I am able to get 4-5 oz. in her over a 45 min. feed with frequent breaks.
Did you lo ever lose weight? But you never had testing, did you? I just still hold out that something might be up because my DD is 20lbs. and 30 inches despite and only takes so little.
-Jodi
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Hi Jodi,
No she didn't loose weight, although the gain wasn't much through that difficult patch. I have a health check after the weekend, so will find out then how she has gone over the last two months. My DD only takes about the same amount at each feed as your DD... and it has been worrying me. My DD is closer to 17lbs at the moment I think though so a little smaller than yours. Anyway intersting that they both prefer smaller feeds.. and I only feed 3-4 hourly, so it is not as if my DD is eating small frequent meals.
I hope things are settling for you and your DD?
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Hi there--Pretty much the same. Had her weighed yesterday. It should a 5 oz. increase in one week, so she's gaining. Tho I think her constipation as of late weighs her down--lol But anyway, no noticeable loss.
Let me know how you get on.
-Jodi
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My dd is 4 mo and is already being treated for reflux with Zantac, reglan and levison and Nutramigen, however she has started refusing bottles again.
Would there be any harm in trying the thickeners as a treatment without all the testing? Is there really any other treatment than thickeners? My dd will eat bottles fine when she is sleepy. She will have an occasional good bottle but most are very fussy and very squirmy. She should be taking 6 ounces and will often scream after 3 ounces. She might even cry when she sees us putting the bottle to her mouth. We just introducted rice cereal 2 days ago and she LOVES it. She will eat it fine and be happy but refuse her bottle at the same feeding.
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Hi... this is my first time to this site, and this was the first posting I cam across. I hope someone can help. It seems this problem may just be popping up with my daughter. She's a month tomorrow, and has recently been very fussy when she starts eating. I switched to pumping and giving her a bottle at 2 weeks old (we use Avent). She was doing fine, but now fusses, and it seems like either she's taking it in too fast (when before it was fine) or not fast enough. She starts drinking, and then cries when it starts coming out. As soon as I take it away, she's fine, but it seems like she wants more. And, I notice at night, she takes much more in, I guess since she's sleepy. She has been gaining weight great, but I hate to see her start loosing weight.
Can someone help me on this? Does it sound like Dysphagia. When she's sleepy, she'll take 4-5 oz, but when she's not, she'll only take about 2, maybe 3 if I'm lucky. I feel bad because I know she's hungry. Please help... I'd hate to start having problems now since she's been doing so good.
Thanks!
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Hi there,
I am sorry you are having problems. If you scroll back to look at my posts, you know I've been there. In the end, I think that my son did have reflux, but I was pretty convinced at the time that dysphagia was also a culprit, but I'll never know.
I assume that you have been using the slowest flow nipple. Does she have any other symptoms at all? Does positioning her differently help while feeding? More upright, versus on her side, versus more flat- try all of them (Try putting her on her R side. If it's BETTER, it MIGHT be dysphagia). Do you live in the USA? You could also try thickening the feeds with the Simply Thick Gel. It was the magic bullet for my son. You can order a trial box for $10. The problem is- that thickening feeds is a treatment for BOTH reflux and dysphagia, so hard to tell what is the problem if it works. Also- call your pediatrician. It might be worth it to try reflux meds. (We did Prevacid and that, plus the thickener helped a LOT).
You are doing great- I KNOW how frustrating it is. Email me if you need further help. I know you'll also get other helpful replies. I am not a Speech Therapist, but am a Physical Therapist so know the lingo.
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Hello Jasalyn's mommy and Aspen_Chloe. Sorry I didn't reply sooner, I wasn't getting email's to my regular address that I had a response and I must admit that I rarely check this website anymore unless I'm actually alerted to a response so...........sorry.
Anyway,
clarapist has probably read so many of my posts that she knows what I"m going to say. It doesn't hurt to thicken without the testing to see if it helps, it's just hard to tell what amount of thickening is the best. Because starter packs are now available from simply thick, that's probably a great route to try. Try nectar thick first and then try the honey and see if you get any results. Both of your lo's are showing signs of dysphagia and Jasalyn's mommy, the "drinking too fast..........too slow" is also a sign of incoordination of the suck-swallow-breathe mechanism. Strangely enough, these lo's don't always lose weight; however you want feeding to be a pleasant experience and fussing and squirming while feeding isn't pleasant!
You can try positioning. Side-lying is somtimes helpful if you're lo is still small enough that they will let you hold them this way and of course sitting up as close as possible to a 90-degree angle for feeds may help-also breaking suction from the nipple every few sucks to make them "restart" the suck-swallow-breathe mechanism may help too so they don't have an opportunity to become so incoordinated.
Please email with more questions if I haven't answered them all. I apologize for not being more prompt. I will be out of town Fri. 6/29 through Mon. July 2. Hope things get better for all of you, I know it's difficult/frustrating!
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This sounds about right... I've been dealing with a feeding issue for the past month. However - he seemed to be doing okay up until then? Was eating about 3-5 oz every 3 hours when he was 2-3 mths. Now, he's stopped taking the bottle period when he's awake. He occasionally wakes up when he's feeding, realizes that a bottle is in his mouth, gags or something, then pushes it away. It's so frustrating to say the least. And... the sleepier he is, the better he eats - so sleeping though the night is out! I'm not sure though if this problem would just get worse - as it has? Because as I said, before about 1 mth ago, he was doing fine. We started on solids in there too... so I don't know if maybe this is just a problem with the solids giving him a tummy ache so he doesn't want to eat or what? Very confused...
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I can tell you that it's not uncommon for this to become more of a problem when lo's are around 3/4 mos. because that's when they "wake-up"-become more alert which means they are often more awake for feeds and they become more sensitive when things aren't going right (like when food/liquid is compromising there airway). Does this help? Let me know if you have more questions!
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??? Today has been the worst day probably yet. Days like these make me long for when he's majoring in solid food... there's no issue there! Is it normal at this age then that they don't want their bottle when awake? Should I mention this dysphagia to the doc and see what he says? He gags a lot and that's normally the end of the bottle session. Maybe we're using nipple that's too fast? But he was fussy a lot on the last, which is why we went up one. Also.. is very gassy lately. Do solids sometimes make their stomaches hurt? Just don't know what to do with the little guy!! Thanks a lot!
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Long time since i have logged on but wanted to give a quick update. We have been using simply thick now for two months and it has made a night and day difference. Our LO has no problem eating now and will put a 7-8oz bottle down in 10 mins or less without any pulling away or getting upset. We are going to try reducing the thickener amount now and see if he continues the same successful eating. As mentioned earlier we changed pediatricians so that we could get a barium swallow test done but then got cold feet the day of and decided it was better to just thicken without a definitely diagnosis given the great results. Thanks for all the help and we will keep you updated.
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Today has been the worst day probably yet. Days like these make me long for when he's majoring in solid food... there's no issue there! Is it normal at this age then that they don't want their bottle when awake? Should I mention this dysphagia to the doc and see what he says? He gags a lot and that's normally the end of the bottle session. Maybe we're using nipple that's too fast? But he was fussy a lot on the last, which is why we went up one. Also.. is very gassy lately. Do solids sometimes make their stomaches hurt? Just don't know what to do with the little guy!! Thanks a lot!
Sfamily-just keep doing what you're doing. I'm really glad you've had success with the thickener and that things are going well for you. Jakesma-I can tell you that if he's having trouble then go back to the slower flowing nipple or the slowest flowing nipple as your first step. He may be more gassy lately too because: 1) If it is dysphagia and he is showing incoordination in suck-swallow-breathe, then he may be gulping and/or taking in more air than he should and/or, 2) it's pretty common for babies to have other GI issues as well (and yes, solids may make him gassy, my own lo's never had too much trouble except with sweet potatoes, but all babies are different!).
The older lo's with dysphagia get, the more aversive the bottle becomes to them. They are more likely to take it when sleepy just because overall their sensitivity to everything is shutting down and they are less aware of any compromise to their airway (or anything else). My sons best feeds were always his night feeds and his last feed in the evening. He often made up for calories at that last feed sometimes (even at 2-3 months) he would take 9-11 oz. at that last feed whereas the rest of the day it was only 2-3 oz. per feed and then the fussiness would begin and we would struggle to get him to eat for the next hour. Definitely mention it to your doctor. If you're lucky, he'll take what you're saying seriously and try to help you, but I must warn you that many people don't have much luck with the doctor (as you can probably read in past posts). I hope you get some relief quickly, I know and feel your frustration and pray that you get answers soon so that you and your lo can resume pleasant feeds. Hang in there, there is an answer and it will get better. If you don't have luck with the physician, as you have also probably read, some try to thicken without a modified barium swallow test. I don't necessarily recommend it, but when you're desperate and not finding any help, it may become a necessity for you to resume some normalcy with feedings. Let me know if I can be of more help.................
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What do I use to thicken? Rice seems to make it flakey not necessarily more thick. What else could I use?? Thanks!!!
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I'm not certain where you are from. I live in the US and my #1 choice is Simply THick. If you read back in the posts, you can see why. It's pricey, but it thickens perfectly, easily and stays the same consistency over time without getting too thick. Another option is powdered thickener which is inexpensive and can be found in most drugstores. In the US a few we have are Thick-It and Thicken-Up. IF you just ask the pharmacist for a liquid thickener, they will know what you're talking about. Try it if you can't wait to see if the dr. will refer you for a swallow study, but at least attempt to talk to your physician about it or contact a facility which may do pediatric modified barium swallows in your area and tell them what you're experiencing! HTH!
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My DS is only 5 weeks old and I have noticed the symptoms that you had with your son, Nancy. Ever since he was 1 week old I have been talking to my Doctors about his sceaming and thrashing when I am trying to feed him his bottle. When I stop feeding him he will stop crying. It is gut-wrenching becuase I know that he is in pain but he is also hungry. I have been giving him gripe water but it hasn't helped. I thought that it may be reflux but he doesn't throw up alot. I noticed that he also has a stuffy nose when I feed him. I am going to talk to my Dr about having the test done because I know that something is wrong. My daughter was a fussy eater but not like this!
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Sarah,
your lo's showing classic signs of dysphagia and I hope you have luck with your doctor. It isn't uncommon for this to run in families, so even if your daughter wasn't as bad (and babies vary in their reaction to dysphagia) it may have been the same thing. Good luck and let me know if you have more questions!
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Nancy,
Some other questions that my husband and I have are these: 1. Does it have to happen EVERY time he drinks a bottle? I know that you said that they drink better when sleepy, so my son is upset about 3 out of 7 feeds. During those 3 feeds he seems frantic. His hands are swatting at the bottle, his brow starts to wrinkle, he starts turning his head from side to side and starts to sputter milk out of his mouth. This is when I start to hear his nasal congestion. If I take the bottle out of his mouth then meal time is OVER. He will not take anymore. I can usually get him to drink about 1.5 to 2 oz. before he starts showing signs that he is getting upset. Sometime I try to talk him through it and can get him to take 3 to 3.5 oz. but that's it! I think that he should be drinking more because he was born 10 lbs. 1/2 oz! He is not losing wieght, he is growing. I don't think that it is a problem with formula because we changed to soy (as per my Dr's request) and he seemed even worse to the point that he wasn't drinking any formula so we swithched back. *2. Can this be due to gas? He is having a bm about every 3 days and can be quite gassy with toots. Burping him is a bit of a challenge and he only burps about 1/2 the time. My husband says that he thinks that it is gas but my instincts are telling me it is also something else... 3. Does your son wake often in the night because he isn't getting enough food in the day? I find it hard to follow the 3 hour EASY because he doesn't eat very much during the day and wakes after 2 hours with his hungry cry. But then because he is upset, feeing him is a challenge and that's when I can usually only get him to take about 2 oz. Anyways, I know that you are not a Dr and I have made an appointment to see my DR this week but you obviously know alot about this topic and any more info would be greatly appreciated...
Sarah
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1. Does it have to happen EVERY time he drinks a bottle? It most likely happens with all bottle for which your son is more alert-the signs he is giving are really very much that of a lo with dysphagia. It honestly sounds a LOT like my son did when he was little.
My son continued to gain weight for quite some time (months) and then it slowly decreased. He never actually stopped gaining, but at one point he just didn't make any changes in weight. Oddly enough, these lo's don't always lose weight, but many do and failure to thrive becomes an issue. Dr's are reluctantly to refer until lo's start to lose weight. Something I maybe haven't made clear to mom's in the past is, there is really no reason to weight until they lose weight. I'm saying that because, speech pathologists are the ones who diagnose dysphagia, not GI Dr's you often can't get a referral to unless lo's start losing weight.
*2. Can this be due to gas? He is having a bm about every 3 days and can be quite gassy with toots. Burping him is a bit of a challenge and he only burps about 1/2 the time. My husband says that he thinks that it is gas but my instincts are telling me it is also something else...
Many babies have gas and my son was no different (nor my daughter), my son also had fairly significant gas and reflux and constipation was a problem too. This is not a stand alone issue by any means, but the signs your lo is showing are more related to feeding, not gas.
3. Does your son wake often in the night because he isn't getting enough food in the day?
My sons sleeping was nightmarish until we got the feeding figured out. I'm not kidding you (nor trying to give you too much hope) but as soon as we got the feeding sorted out, he completely fell into a schedule (around 4 mos). It could be coincidental, but he also just became a more content little guy.
Anyways, I know that you are not a Dr and I have made an appointment to see my DR this week but you obviously know alot about this topic and any more info would be greatly appreciated.
I'm definitely not a Dr., however speech pathologists are the ones who identify and diagnose dysphagia, not doctors. Hopefully you can find a pediatric speech therapist in your area who deals with dysphagia. Call around-your Dr. can just refer you to a speech pathologist rather than a GI physician and get the whole thing rolling a lot quicker. I hope this has been helpful. If you need more answers, let me know!
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Just wanted to update-I bought Simply Thick to try and dd seemed to be frustrated with it. While working on that feeding I tried (successfully)) to feed her with her on my legs and my feet propped on a table so she is laying on her back on my thighs. I tilted the bottle to the right so she had to turn her head to the right and thus couldn't choke so much. It was a miracle worker! I figured she might get use to Simply Thick but she was so mad that night I just gave up and we discovered our own little solution. Now I don't have any problems if I feed her like that - she refuses a bottle in the "cradle" hold. I also have to be patient and pull the bottle away and let her "restart" occassionally.
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Good for you! There are definitely some positioning techniques that can be helpful and as much elevation as possible (and especially with a head turn) is one good way. At least you have the thickener available if you need it in the future. She may not like this position for much longer, however, she may also switch to another position, but learn to turn her head as that's what she will be used to and that will be helpful. So glad that things are going better!
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Hi Aspen--
A possibility with the Simply Thick is to also play with the amount that you thicken. I started using it with my DS at about 3-4 months. I thickened the formula to 1/2 strength (ie instead of 1 small packet to 4 oz, I used it with 6-8 oz). I also used the next flow rate up with the nipple (size 2). HTH
Jill
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Thanks! I figured I did it too thick for the first time. So if she starts to have issues again, I'll try it with less in it. I noticed it increases the amout of liquid in the bottle by quite a lot. Does this decrease their actual intake of formula since they have more "filler" in it or do they just drink more liquid?
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Hmmmm- I don't recall there being much of a difference. I think b/c I made formula in a pitcher and then made bottles to put in the fridge.
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The amount will seem a lot greater at first, but as the formula/thickener settles there's little to no difference in the amount. I too always made mine up the night before so I never really noticed it when I went to feed; however, just make up as much formula as your lo would normally feed and then thicken as directed (1pkg/4oz) or as you see fit!
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Hi, I've just come across this thread and it sounds like my dd may be in the early stages of this? She is almost 10 weeks old. Last week, I noticed she was taking a long time to finish a bottle, drinking an ounce or so then coming off, being winded, then drinking an ounce at a time until finished. Looking hungry but just not drinking very fast. I changed to the next size teat about 10 days ago. On monday (evening - very awake) she drank an ounce or so of her bottle, then started screaming and went rigid (head back, back arched, legs extended). It passed after a few minutes and she was able to finish her bottle. Monday night she slept through for the first time, well near enough - she woke up at 6 and I held her off till 6.30 so she was pretty awake to feed and we had the same performance. She was fine all day and then the same thing at her evening feed. Wednesday went to the doctors and he said, colic, peristaltic pain, whatever, and gave her colief (lactase) drops which so far have made no difference. Every evening and probably 1 or 2 other feeds a day she will drink an ounce maybe and then scream. When I put the teat in her mouth she will scream. It's like she settles down then and will take more, but when I try to put the teat in her mouth she pushes it out with her tongue several times but if I persist she will take it. She is taking 40 minutes to finish her bottle. She is fine at night (dream feed and night feeds) and about 1/2 the day feeds. The other thing I have noticed is she sticks her tongue out a lot, pushes it out of her mouth. (This sounds horrible but to me it looks like a baby with down's syndrome - this is what it reminds me of). This stops her from taking a pacifier. She coughs and sneezes quite a bit but is a good sleeper. I have an appointment with my GP this afternoon and will ask about this. Oh the other thing, I have started giving her infacol drops with a dropper thinking this was trapped wind and she is VERY distressed to take drops. Any thoughts? Thanks
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I would definitely put the bug in your dr.'s ear about this. If you're one of the fortunate ones he/she will listen to you, but I must tell you not to be too optimistic about that. Her signs/symptoms sound like this is what it could be, but it's hard for me to say for certain. Does your lo reflux? Since having trouble with the increased nipple size, did you go back tot he smaller size-if you haven't go ahead and do that now. The length of time it's taking her to feed and being more fussy when awake for feeds are a few telltale signs. She has enough signs that it would make me want to rule out dysphagia.
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Been to the dr today, she didn't really know about dysphagia but said that aspiration should be painless and since lo is apparently crying in pain she doesn't think it could be dysphagia? Does that make sense? Of course she picked up on the teats as well, I went back to the first size tonight and lo fed fine, drank the whole bottle with barely a peep - and she was well awake, having just come back from the dr and had her bath. Of course, n=1 doesn't mean she's ok!
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Well, I try to be very careful when responding to what physicians advice is when I disagree; however, for ANY physician to tell you that aspiration is painless is really completely absurd. >:( Everyone aspirates or nearly aspirates from time to time, this happens when "liquid goes the wrong way" and the result is what?.........oh, that's right a mild to major coughing spell. Now imagine have this difficulty as an infant and having to eat the way they eat. They are lying flat on their back or somewhat inclined, sucking liquid from a nipple that sends the liquid straight to the back of their throat leaving them no time to manipulate the liquid or stop it from going into the airway vs. the esophogus. Further, babies really can't eat any other way nor can they communicate the problem to you verbally; therefore, they fuss, cry, refuse the bottle, etc.
I will have to tell you that I've had some success educating dr's in my area about this (and I live in a very rural area so that's not always easy), but all in all it just feels like this is an uphill battle at times. It's just soooo frustrating, I honestly can't understand why the physician wouldn't just listen to the info you have and say "it can't hurt to have it checked out", because it absolutely can't hurt to have it checked out, the only negative to the swallow study is the exposure to radiation, which is typically VERY brief, other than that, it can answer lots of questions and really make feeding a pleasant experience again, which is how eating was meant to be!
I apologize for being so fired up about this reaction, but to tell someone that aspiration is painless is crazy to me. Your lo is trying to communicate with you the best she can and the dr. should be trying to problem solve beyond the drops that you say aren't working. Wish I could be there to help you, just be persistent and if I can be of further help, let me know!
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Thanks, I will try to get hold of some of the articles you mentioned earlier in your post before we go back on Monday. I was kind of thinking that, even if the aspiration WAS painless, it must certainly be frightening and I sure don't think I could tell the difference between a fear cry or a pain cry.
Needless to say I am hoping that it is just the different bottle teats combined with a fairly spirited baby.
Thanks again, will let you know how we get on.
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Hello.....i came across this post as i was looking for information about eating, and why my twins were having such problems, and i now think i may have found it. I have fraternal twin girls who are just about 6 mo and for the last month at least feedings have been a struggle. both my girls have reflux, and we had that diagnosed early on....1-2mo old....they have been on all sorts of meds, and finally we think the prevacid has been working. When they were origninally diagnosed we had an upper GI series done on both, to make sure there were no anatomical issues, and we were cleared of that, but it showed that both girls had severe reflux. one of our girls...Abby, they also did a barium swallow test on, because our gastroenterologist was concerned with her coughing while eating....but the swallow test showed no problems...they had a speech therapist there also while they did the test. our other twin Makayla, never had the swallow test done, at that time she wasn't showing those symptoms, or having issues with eating. Now however, she is the one i am very concerned about. i decreased the amount of their bottles from 6oz down to 5 cuz they weren't eating but 2-3 oz every 4 hrs and then refused the rest...Abby would just refuse to let us put the bottle in, and Kayla would scream and fight and arch away from it....she gets sooooo upset. i found her bedtime feeding to be just as bad as the others....although we found if we put her down like she is going to sleep and then try to feed her in the crib she will take it most times, or last night, she got so upset, i gave her the paci to calm her, and as she started to get drowsy popped it out and put the bottle in, and then she ate 6.5oz. She also has never had issues with the middle of the night feedings...just eats and goes back to sleep. I don't notice any congestion with her, but i have seen from the other posts that some babies don't show that symptom. so i'm a bit confused, b/c abby is refusing to eat but is not getting upset about it, but she is also really wanting to play and practice crawling, so i don't know for her if it is just a matter of her wanting to do other things besides sit with a boring old bottle, and since she has had a swallow test done already....should i have another one done on her??
With Kayla i'm convinced that this is not normal for her, and since she gets so upset i think i need to really evaluate this as a possibility.....i don't want her to aspirate....i'm scared to death of that....or develop pneumonia, as my 2nd daughter died almost 2yrs ago from a combination of croup and pneumonia(they never knew she had pneumonia until the autopsy). Luckily, we are working with a gastroenterologist for their reflux already, and i put a call into her voice mail last night after i read all these posts...so hopefully she will call me back today, and we have a wonderful childrens hospital here (UW children's hospital)as we have been there many times for lots of tests on them. So i guess in all my ramblings here (sorry so long)i just need to know if you think that this could really be the problem, and i should have a swallow test done on Kayla, or both of them, or am i totally off my rocker, and need to just wait it out and see if it improves after their teeth come in(we think they are teething big time). I appreciate you reading this, and any advice or help you might have would be wonderful....if you need any other info please let me know.
Thanks for listening!!
-Robin-
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You sound very overwhelmed! I'm sorry you're having trouble and very sorry to hear of the death of your lo a couple of years ago. You probably need to set up a "bedside" evaluation with a speech therapist. When you say UW do you mean Wisconsin? I know that they do have a good program there and some outstanding speech paths. that should be very helpful to you. When I tell you to set up a "bedside" evaluation, what I mean is that maybe you should just go in and talk to a speech pathologist who is knowledgable about feeding disorders/dysphagia and see what their opinion is. That is what I always do first. If a physician has concerns with feeding, I like to evaluate the child first at the clinic and then decide from there if we should do a modified barium swallow. Going by what you told me, I would probably want to do tests on both of them. If there is a long wait time for a regular/"bedside" evaluation, and you could set up an MBS quicker, I guess I would probably go for that. Keep in mind though, it's always easier as a professional to make that decision if you've seen the lo first. You just sound very anxious, and understandably so with the history of your other lo, but it doesn't sound as if your twins are having respiratory issues so I wouldn't be too worried about pneumonia. Lots of lo's aspirate without getting pneumonia and that's often because they are otherwise healthy and mobile. Respiratory symptoms are just one sign.
All children show different signs and, while again, I can't say if Abby is having this issue for certain, not all lo's fuss at the bottle, sometimes they do just refuse it without fussing. My lo was extremely fussy about it (and still is a fussy kid), but I often see more laid back lo's in the clinic who deal with the issue by just passively refusing the bottle and/or playing with the nipple rather than sucking from it as they should. Have I helped you at all? It sounds like you've at least had some help through a GI physician so at least that groundwork is laid and you're already treating the reflux. Sometimes just improving the reflux will improve the swallowing problems, but not always and it's often necessary to treat both. Look into it and hopefully you'll be able to find a good speech path to lead you in the right direction. If I can be of more help, let me know!
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I read all of this post located in a different area and made it to page three of this one. I am going ahead and asking my question b/c I'm at my mom's and she is watchind ds and is having a cow b/c he keeps spitting up LOL...
N e ways... to my story. My son is now 6 months old. He was a 34 weeker and had to spend a couple weeks in childrens hospital. He was fed by a feeding tube for awhile and then bottle fed nectar consistency using thickit and the thickening agent.
Fastforward to 5 weeks of age. He has a mbs done and it showed frequent deep penetration on thin liquids and mid level penetration on nectar so off to honey we go. He never aspirated thoughout the entire study.
Month 3 1/2 we are now changed from thickit to simply thick b/c one he has gained enough wieght and we do not have to worry about the added quanity w/o calories that comes with the simply thick and 2 we are dealing with explosive D. To the point most ppl are not wanting to hold my cute little son (unless they are super close to me) for fear of being pooped on. So from month 3 1/2 to month 5 we are on simply thick. Surprise! Now we are constipated and giving him karo basically every other day for this entire time!
Now ped said we can try to take him off of it and try thin liquids b/c he is no longer holding his breath while he eats and this could have possibly solved the problem. He also said that if more babies were given swallow studies that more would be put on thickners b/c it really is a more common problem to have penetration than most ppl/drs realize. (I also want to point out that he didnt send us for these studies they are follow ups from what was already decided from childrens. Also this ped was highly recommended by childrens hospital)
So anyways we go from month 5 to month 6 no thickners at all. He does have about 5 eposides during the month that he coughs (about 2 to 4 coughs in a row) while eating. We have no problems with him wanting to eat he is like a fish coming to the surface for the food. He has had no respitory infections etc.
On a friday we have our 6 month shots and he listens to his lungs and everything is great. We go ahead and keep our next swallow study appointment set up by childrens on the following monday. Low and behold total crisis by speech path. The study shows no improvments. Still deep penetration on thin liquids back to thickening you must go and were you crazy to ever stop!!! He again did not aspirate during the study and to our knowledge has not done so during the month we have fed him. We are so confused on what to do b/c we have such bad belly issues from the thickners and the speech path also said there is a high probabilty he will aspirate at some time but then again he may never do it. I was devestated I know I know it could be worse but to know I had been feeding him this for the past month..I left the room to go to the truck and cry while dh's delt w/ the rest of the appointment. Not one of my better moments as a mom. So now I have questions that I did not get answered and was hoping you could help me out. The main one... how great of a risk is not thickening the liquids. She said high probablity. I like numbers that make it more concrete. Also her suggestion was to add one Tbsp rice cereal per ounce. That is 30 Tbsps of rice cereal a day to me that is just absolutely nuts!!!!!!!! In your line of work do you find that babies often do have deep or mid level penetration? I called the ped right away. The nurse said...calm down honey...we will get those results as fast as I can (which may be wednesday...ie tomorrow) and then he will look at them and we will get you in here to discuss them with him..They are great I just want some feedback from ppl actually dealing with what I am not just the medical but also the mother part of seeing your ds have belly issues day after day.
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I would like to share a bit of information that I researched that helped me out on the thickners. The simply thick is really expensive. Our insurance wont touch it and we don't qualify for any help on paying for it. It was breaking us each month. So I figured out how to make it. If you read the back of the label the first two ingredients are water and xanthan gum (they have to list them in the order that is the greatest quanity in the product). Guess what you can buy xanthan gum!! It is what is used to thicken toothpaste, ketchup etc. I used this for about 2 weeks b/4 he told us to try thin liquids. I put 1 1/2 tsps of xanthan gum to 7 1/2 ozs of water and shake like crazy set in the fridge for about 4 hours and shake like crazy again (you may even need to mix it with a spoon before shaking). Then when you make up your formula just pour that in (I was making 24 ounces at a time). I thickened his formula for about 8 bucks (would have been the whole month I still have enough left for about 2 weeks worth). You can get it at health food stores or restraunt supply stores. Going from 8 from 200 a month..Shew we cut out some stress for us. Just a suggestion that I used. I would recommend each doing thier on search to make yourself feel safe about it. I did my own and found that xanthan gum is FDA approved and has never showed anyside affects. When you see how small an amount you use of the xanthan gum you will know there can not be that much of the other ingredients in the simply thick. It is my guess that that is to throw off customers that it is just xanthan gum and water sold at an outreagous price!!
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Thanks for your post and for your experimentation with thickening on your own. As far as your concern with your lo, it's hard for me to say as I'm not the treating/evaluating therapist; however, I will say this. I have a good friend who has a (now 8m.o.) with spinal bifida. She had concerns at 3/4 months about dysphagia and spoke to me about it. They scheduled a swallow study to be done at one of the babies myelo-clinics at 5/6 months as a result. Between the time of her initial concerns and the time of the swallow study, my friend had decided that she really was no longer concerned. I had encouraged her to help pace her daughter's feeds a little bit and things were going well. We went to lunch the day before the myelo-clinic/swallow study and she said even though she wasn't concerned, she was still going to do it because it was scheduled; I almost told her to just cancel it if the concern wasn't there and avoid putting her lo through the test and the radiation. Well, I didn't and guess what...........her lo penetrated on everything including honey. The suggestion was pudding thick.....she was devastated. She then asked my advice and after pondering it, this is what I said. Ultimately, she was no longer showing signs/symptoms of difficulty, no fussing, no related illness, so why fix something that ultimately isn't broke? If she starts to show problems, then start thickening again. While swallow studies give great info, they aren't the end all be all.
You know your lo has a likelihood to have difficulty, so pace him, if he starts having more difficulty then thicken. Ultimately, you want feeding to be a positive, pleasant experience.............
Does that help? If not, please don't hesitate to ask more questions!
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Thank you so much for the fast reply. I came home and dialed into my terrible dial up thinking there would be no way I would have gotten a reply but was so eager I had to check. Your answer helped me very much. Exactly what you said to do is what I feel in my heart I should do. I am just scared of making the wrong decision and needed to see if other moms would consider doing the same thing I felt to do. If they told me we were absolutely going to have aspiration and terrible effects from not thickening there would be no question but since that is not what was said it just breaks my heart to start this over and watch him spend two to three hours a day (atleast) drawing up his legs and screaming with tears rolling down his face. I try to comfort him but really I think its only for me b/c it doesnt seem to do any good. Now one whole month off the thickners and yes he is a fussy baby but it is a different type of fuss and no more drawing up his legs and stuff like that that indicates to me his belly hurts. I think the fussiness now is from the reflux that we are treating with reglan 4xs a day but that is the next topic I'm off to research b/c I dont feel like I'm getting the results I desire. He spit up a min for 50 times today. This is another one of those just a select few will hold him now b/c they say (I don't want that on me!). Which I don't really want it on me but to be truthful it hurts my feelings and makes me mad for family members not to want to get to close to him b/c they will prolly get spit up on them. I mean it isnt all of them and I have tons on my side of the family that would hold him when he pooped everywhere all the time and still hold him when he pukes they just say give me that baby I can wash!! He has finally caught up on height and is in the 50th percentile for a 6 month old (even tho he should have only been 4 1/2) but he is in the 10th to 25th percentile on weight. I am quite certain it is from all the spit up b/c he eats 28 to 30 ozs a day he just doesnt keep near that down. Once again thanks soooo much!
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Please just be certain that he isn't fussing during the feeds, if his feeds are pleasant and positive then don't change anything. My lo was diagnosed at 3.5 mos. and we had to thicken with him until 2 years of age. They do eventually outgrow it, but it varies from child to child when. Reflux and dysphagia often go hand in hand as the reflux will sometimes create poor sensation in the throat which leads to poor timing in the swallow as the babes don't sense things adequately to know when to trigger a swallow-lest they aspirate because the don't trigger correctly.
If you feel that he's doing okay right now, then stick with what you're doing. Just be watchful and if you notice problems, you'll know to start thickening again.
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I have been reading this info and wanted to share my story. Ds is 12 weeks old and is has always been a fussy eater. We nursed until 5 weeks, but he was always bobbing off the breast and I was having to burp and switch back and forth frequently. He was always squirmy and difficult to keep going. I never felt comfortable nursing in public because of this, and decided to bottle feed as I have an active 5 year old dd. He took the bottle, but has always been somewhat disorganized with that too. Over the last few weeks he has started to cry and refuse to eat sometimes. He usually gets to 1 1/2 - 2 oz and then we have to work with him to have the rest. Sometimes he will, others he just won't. He is also a horrible napper, but does okay at night. He only fusses while eating, not afterwards. He does choke sometimes, does not spit up, but usually chokes when you are trying to get the bottle back in once he is fussy, so it is hard to tell if we are choking him or he is having trouble. He takes his best feeding at night or while sleepy during the day. At first, I thought it was constipation as he often grunts and pushes. We started fruit juice and sometimes use the thermometer to get him going, so now he usually goes once daily, always soft which seems to indicate that he is not constipated. Even after going, he is not interested in starting back on the bottle. The last bottle of the day is the worst. He usually cries during that one. My husband, who does that feeding, has to give him the pacy and get him really calm to start up again. During the day it can take up to 45 min to feed him and an hour at the evening feed. If awake at night, it is usually worse. This behavior does not fit the rest of his personality since he is normally pretty happy and smiley. I took him to the Dr. and she started me on Gentlease thinking it might be tummy, which he refuses to even take. Since he only takes 20 oz a day (with me working with him) and is 12lbs, I haven't pushed it. He is only waking once at night to eat and has been taking 5 - 6 oz during that feeding. The dreamfeed never worked for him because he is impossible to wake up to eat, so we let him wake. He eats every 3.5 - 4 hours, but sometimes doesn't even seem hungry at that.
I am going back to the Dr. today with this info to see if we can investigate for swallowing issues. I am hoping there will be some great resources here as I am in Augusta GA where the first abstract was written!
My question is, could the grunting/straining and looking like bm be really stimulated by the cough/choke reflex? Does the fact that he starts out eagerly for a few oz and then quits seem to be a strong indicator of this problem?
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I would definitely look into it. I would think you would have some luck being in Atlanta. If no luck with your doctor, maybe try to find a pediatric speech therapist who works at a hospital or outpatient clinic and see if they could help you. If you came to me, I would definitely try a few things as clearly something doesn't add up. You're lo has a lot of the classic symptoms. A therapist may even do a oral-motor exam and help with some strengthening if any weaknesses are found. Sometimes even subtle weakness in the jaw and cheeks can cause difficulty with timing of the swallow. It depends on the therapist. Is your lo truly constipated? It really all goes together, if you're lo is having difficulty with bm's eating will likely also be an issue. It's all part of the same system! Let me know if you have more questions, or if I didn't answer your questions (I'm a bit distracted by my 2 lo's right now!).
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Relief! Talked to my Dr. on the phone, and she is referring me to a speech therapist! She is calling MCG (where the abstract was written) for someone she knows of, and she mentioned the MBS as a possibility without my prompting. This person can be hard to get, so keeping my fingers crossed.
To answer your question, he doesn't seem to be truly constipated since his bms are always soft, but he does seem to have issues getting it going. I guess I could have two problems which is why the signals are so confusing. Thanks for the orignal post. I would have no clue that this could possibly be the issue and would still be wrestling my son to eat...
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Of course today he had a decent day with 3 - 4oz feedings so far. Makes you wonder if you are crazy...
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Wow! That was just too easy! I'm glad you will be getting some help! And as for you being crazy, we all go crazy when we have children!!! :P It all gets better! ;) But you have an older child, so you know there is a light at the end of this tunnel! Let me know how it goes and good luck!
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Can I just vent about how confusing motherhood is?!!? Today was another crappy feeding day with a total of about 9 oz for the day until his evening bottle and then a 40 min fight to get him to take it. He did not have a bm today, so it could be related to that as well. Anyone had experience where lo's refuse to take a bottle when they don't go? He isn't technically constipated, since when he goes the bms are not hard. So why does he have such trouble having them? I would think by 3 months he would be getting it together, plus it seems worse lately. On the constipation side, I am giving a mix of apple and prune and water also several times a day to help. I hate introducing those sugars this early. My daughter had constipation too, but when she went you could tell it had been firm AND I don't remember her refusing to eat because of it. AND he seems to give up pretty quickly. Is that common?
I am still pursuing both routes. He does seem like an uncoordinated eater and I am hoping the speech therapist can take a look at that too.
You just worry so much about the eating thing. I would hate to think my baby wasn't getting enough... plus he is a terrible daytime short napper which I feel may be linked to the eating. You have to get the eating right to procede sucessfully with the sleep.
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Well, a few days with regular bm's and no improvement. It is pretty much the same pattern. A few oz's down, then fussing, then 20 mins of soothing, and then he'll take more, sometimes. We have to work really hard at getting about 20 - 22 ounces per day. He is over 12 lbs, so that seems like the minimum he should be getting to me. I am going to call the Dr. and schedule the speech therapist. The easy schedule is always out of sorts because of his eating habits. IF we can get a good evening feeding in before bed, he'll only get up once at night. Otherwise it is pretty erratic.
I feel pretty discouraged right now.
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I am only sporadically getting emails about replies to this message, so sorry for the delay (I don't check in here much anymore beyond responses to this message). I completely feel for you and how discouraged you are! I thought that you were already working on getting in to see a speech therapist? What type of formula is your lo on? My oldest was had trouble with bm's until we switched to Good Start by Carnation. I know some individuals don't endorse anything by Carnation d/t some issue I know little about (but I have read about it), however, there formula has different proteins that make bm's easier for some and this was definitely the case for my lo. Just a thought, because, while it may not be the main problem you're dealing with, it does all go together.
The speech therapist should be able to evaluate the whole problem for you (if not, find one who can!). I hope you get help soon and try do something to keep yourself calm in the meantime. Meditation really does work, find a quiet spot and breathe when you have a few moments! It will get better, it has to!
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Thanks. It just helps to talk it through.
Yes. I thought maybe I was jumping the gun a little so I told my Dr. to hold off. I am calling tomorrow to get back on track for the speech therapist. It is definitely not related to the bm's as he went this am (5 AM to be exact) and then fought his bottle at 7 AM. It took my husband an hour to get 4 oz down. I am so glad he helps so i am not the only one working with him. He did okay for the next two bottles though.
He is on Infamil Lipil. The Dr. suggested Gentlease, but I am having to mix it in 1/3 at a time because he refused the new formula outright. We started mixing yesterday, so I am going to gradually work him onto it. I am giving him a little fruit juice and water every other day as well.
I know it does get better, eventually. I have a five year old and I keep telling myself, he only takes a bottle for a year! My daughter had colic, it was horribly traumatic and took me five years to get brave enough to have another! Deep breath.
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I am going to call the ped. tomorrow and see if we can get my son checked for this. So much of what you've described is him. He is now exactly three months old but only started crying the past couple of weeks about the feeding. He has, however, always been difficult to feed.
I'm wondering if this is a life-long condition? Or do they outgrow it?
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Mine outgrew the crying and refusing stage but is still a squirmy eater. He is very distracted but has increased his overall oz. He never drinks a ton until just before bed and the night time. We just went for our 4 mos. appt and he is 15lbs and moved up in the % for weight, so it seems that he is getting what he needs. I was so frustrated at your stage, but it did get a little better. Hope that helps.
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The ped. said it wasn't any sort of dyspagia (sp?) but that he was so congested and his nasal passages were swollen. I've been doing everything the ped. and nurses suggest for this (his sister is also chronically congested.) which includes, humidfiers, steam "bath" (sitting in the steamy bathroom for 15 minutes), saline in the nose and suctioning. He still cries for seemingly no reason sometimes before a feed or during.
But speaking of the squirming--I was wondering about that too. His sister (twin,) is so squrimy during eating. I've wondered if this indicates something other than reflux, for which she is on Prevacid. I try many positions, and it isn't necessarily always like she is uncomfortable. She is a very squirmy girl overall. It makes me paranoid that it indicates something is wrong with her developmentally! But maybe it's just baby / infant behavior?
Anyone?
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The ped. said it wasn't any sort of dyspagia (sp?) but that he was so congested and his nasal passages were swollen. I've been doing everything the ped. and nurses suggest for this (his sister is also chronically congested.) which includes, humidfiers, steam "bath" (sitting in the steamy bathroom for 15 minutes), saline in the nose and suctioning. He still cries for seemingly no reason sometimes before a feed or during.
But speaking of the squirming--I was wondering about that too. His sister (twin,) is so squrimy during eating. I've wondered if this indicates something other than reflux, for which she is on Prevacid. I try many positions, and it isn't necessarily always like she is uncomfortable. She is a very squirmy girl overall. It makes me paranoid that it indicates something is wrong with her developmentally! But maybe it's just baby / infant behavior?
Anyone?
How old are they again? Mine got very squirmy around 3.5 months and still is. Or could it be that the reflux isn't well controlled? When Ebby, my 3 year old was a baby, she was always congested and was difficult to feed. We had her evaluated by a speech therapist, who said her adenoids and nasal passages were swollen because of reflux. When was the last time the Prevacid dose was adjusted? Is your ds on any kind of reflux med?
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I am going to be getting her the liquid form of Prevacid tomorrow, just talked to the doc. today again. I don't know why they adminster the dissolving kind to babies, it never truly dissolves in the bottle! It often gets collected in the nipple and rim! Hopefully this liquid form will address reflux if it is there.
The squirminess started I'd say at about 2 or 2.5 months? She (and her brother) will be 3.5 months tomorrow.
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I hope that solves everything for you guys. At least you'll be able to cross one thing off the list!
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Sorry, again. I don't get notifications, I just happened to check to see if anyone had posted lately.
I would check this out for both of them further. They are both showing signs/symptoms and that is not atypical. This definitely goes hand in hand with reflux.
The answer to the "life long" question. These little ones, as long as they are otherwise typical, do "outgrow" this as they learn to compensate and gauge their drinking. There is really nothing more complex than bottle drinking. The timing is easily thrown off.
As far as positions (not sure if I've ever mentioned this), have you tried side-lying? With your legs together, hold them in the crease between your legs on their side. Give them good head support and try feeding that way. It gives them more control as gravity isn't working against them quite as much and if they are getting too much liquid, it will fall into their cheek and out the side of their mouth rather than down their throat. If you can hold them slightly elevated in this position, even better.
HTH
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Nancy (and others!)
So the squirminess could well be part of reflux, you think? I really don't think DS has reflux though. He doesn't cry as if in pain, he sleeps on his back, yes, he does spit up but don't all babies? It doesn't seem excessive. DD likes to sleep on her tummy, among other things, and reflux seems likely. They've become a lot squirmier these past couple of weeks, and they're about to turn four months old. Is age a part of this do you think? They're discovering their hands, etc.
I will try the side lying thing for sure, though. Couldn't hurt!!
Thanks!
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I think age can definitely be a part of it!
Check out this link.
www.index.php?topic=97390.0
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Well, the more I think about it, the more I wonder if DS does have some reflux. I have been trying to feed him on his side but it's been somewhat disasterous--messy, and he hasn't really taken to the new position. But I wonder if I need to persist so that he finds that it helps.
I have some Zantac that my daughter was initially on that I was thinking of putting DS on just to see if it helps. How long do you think it would take to notice if it's helping?
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My apologies, again! Did you ever get any relief with the feeding? At 3/4 months, babies become more alert and are often more alert during feedings, therefore, they may actually start squirming and showing more signs of difficulty with feeding throughout the day because they are actually noticing something isn't quite right. Quite often, night feeds will go rather well though due to decreased alertness. This isn't always the case, but we see this a lot.
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My DD is 18 weeks, and she has some of these symptoms but not all the time. She normally eats better when sleepy but sometimes not. When wide awake, she often gets distracted or just wants to smile and look at me--doesn't seem interested. It often takes up to an hour to feed her 3 or 4 oz, but sometimes she will eat faster, particularly if she hasn't eaten in hours. Some days she screams if I move the bottle anywhere near her mouth--sometimes even if she sees it in my hand. This is the same with breastfeeding. I breastfed exclusively for about 2 1/2 months, but she wasn't gaining weight well, so I started supplementing with formula. Even with breastfeeding, she has often started screaming if I even put her in the feeding position. She is fussy while eating and acts fine--even acts relieved--when I stop trying to feed her. She has not been congested for awhile, but she was congested constantly for at least her first month. She's just been in the hospital for a scalding on her face--her burn healed, but they were concerned about her weight. She refused to eat most of the time in the hospital, so they put a feeding tube in her and also put her on a schedule--eating 100 mL (a little over 3 oz) every 3 hours. I had to attempt to force-feed her before the nurses would finally put the remainder in her tube. This has been very stressful for us both. Now that we're home, I don't know what to do with her. I read this bulletin and wondered if this might be her problem. I have an appointment in 2 days to discuss her weight issue--I might mention this to the doctor. Question is...can she still have this condition if she has the symptoms only some of the time??? And also if she hasn't ALWAYS reacted this way? Some days she'll eat fine--breastfeeding and formula. Other days she would only take a bottle and refuse to breastfeed. Here lately, she's refusing both on most days. What do you think? :-\
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I would definitely mention it to the doctor. Even if it isn't dysphagia, it might be some form of reflux or some other medical issue. Reflux can definitely get worse around this age. Poor baby (and mama). Let us know how the doctor's appointment goes!
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The doctor thinks she's okay. She didn't think it was dysphagia but more likely reflux and possibly burning her esophogus, which would also cause her to not want to eat. She's also been teething. She seems to eat better if I put gel on her gums first, and also she's on gaviscon for the reflux. So, hopefully those things will help, and hopefully she'll start eating more.
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I hope the gaviscon works for you guys. Keep us posted. :)
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OMG. Just read this and this was my DD at Christmas, well up until Christmas. She kept having chest infections, was snuffly all the time. I have videos of me trying to feed her actually because feeding was that bad, feed when sleepy.
She was put on carobel at Christmas and more meds but would the carobel (thickener) help this condition do you think? I think she had this aswell as acid reflux.
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Hi,
My LO is almost 7 months old now and I can not believe I am just discovering this post and this problem. I was breastfeeding (or trying) for months with her screaming in my arms choking etc (bottle was out of the question for her). I had to make her fall asleep before giving her the breast as she would only scream. At one point I could only give her to eat by walking around with her sleeping in my arms. She does not have reflux (my son had it so I pretty much now the signs) and as I was very persistant she did manage to gain some weight altough not much but enough for the heath :-X visitors to say that she was fine. And lets not even start about her sleeping.
When she was 4 months old I started introducing the bottle which was a battle she would only take 3-4oz and this was great for me.
Now she has her days, she manages her solids and sometimes even 6oz of milk but some days nothing does it.
Tomorrow morning I am going to see my GP and I am not leaving before being referred to a Paediatrician.
When I read all these stories I even start thinking I was lucky as I managed to Breast feed until 4 months. Nothing worse for a mother then trying to feed her child with no success, talk about the breast as a pacifier ::) more like a torture machine.
I know the worse is behind us but I just wanted to say GOOD LUCK to all of you and hang in there
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I'm so glad you found this information and I hope that she is on the path to recovering very quickly!
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Hi there,
My husband makes fun of me for reading these but I am so glad I did. Our son is almost 3 months old and we have been having very similar problems for the last month or so. He takes his first 1-2 oz in our arms no problem, we burp him and put him back into the feeding position and he crys. We put him in his bouncy chairs and he sits and smiles happy as a clam. He will then take more but not usually until the bottle is almost old...45 min to 1 hr. For a while we were even putting his soother in his mouth to start the sucking action and then quickly pulling it out and putting the bottle in (work half the time). We are at a loss and getting very frustrated. I have tried other brands of bottles, next step nipples and nothing seems to help. We don't typically dream feed but when we did try it he down the whole bottle one gulp with no fussing.
Do you think it could be Dysphagia? My GP will probably just think I am crazy, so I am not sure what to do. He does spit up but not often..he has some days that are worse than others.
Any suggestions?
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Hi
I have an 8.5 month old daughter, she was born very little (due to a condition with my placenta) 2.35kg's, she was in special care for 2 weeks and being tube fed for the majority of that time. Since the very beginning I have found feeding to be stressful, I tried breastfeeding and it wasn't happening so after 11 weeks switched to the bottle (which took a little effort on her part). Even though this was better, she has never fed well, seems to be significantly less than what other babies her age seem to take in. Her weight gain I have monitored thoroughly as she was so little and I was worried about her feeding I wanted to make sure she was gaining weight, she has gained but always on the low side, at a couple of weeks she had no weight gain and one week had even lost. Overall the clinic kept telling me that not all babies are text book, she "looks ok" doesn't look like a sick baby and maybe she is just a small eater in other words i was being a paranoid first time mother. I have always thought there was more to it. When she started solids it was the same story, it is such an effort to get her drink 100ml per bottle anywhere between 30 min - 1 hr, some bottles she will only take 60ml and I feel like i spend all day trying to get her to "finish" bottles which hardly ever happens, I find that she tends to do better with her bottles if she has little bits every 15 mins or so, with her solids some feeds she just won't eat at all. She does have some days better than others...but generally has never been a good eater. She has always coughed during her bottle feeds, she gags during her solid feeds, and has always had some sort of congestion after both bottle and solid feeds, sounds like she has a cold but does not (last for a little while after her feeds) she does not/has not ever fed herself or put anything into her mouth not food, rusks or toys. The only thing she puts in her mouth herself is her fingers in which case she starts to make herself gag. It was only recently i.e. last night that I started googling for something/anything that might be causing this and eventually came across dysphagia, which to me sounded like it fit...so the google's on dysphagia eventually led me to this site...What I am wondering is if this sounds like it could be dyshpagia or me being dramatic that is causing her feeding troubles, also whilist reading on dysphagia I noticed that a lot of info seems to state that more often than not that dyshpagia occurs in babies with other conditions one of them being muscular dystophy, when I read this I freaked out as my partner had an 8 mth old baby boy (from previous marriage) that passed away from SMA...so I am starting to worry a lot, I intend to get her into her paediatrician as soon as possible (although he has always spoken to me like I was an idiot so I am expecting him to tell me I am being dramatic), and also am getting the name of another paediatrician that a friend of mine's child used and she just loves her (as I am expecting a non-helpful response from the current paediatrician). The whole "aspirating" thing sounds frightening and I am wondering if it is something I should worry about in the meantime, i.e. until I get her to the dr's or not??
sorry about the length....
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Hi,
I've been reading through this post (didn't make it through all 16 pages, but getting there) off/on for days now. I am not an expert, but I am a full time mom of a DS who is 9 months old, has GERD and dysphagia. First and foremost advice I can give you: you know your child best, and if you think something isn't right, don't give up asking questions until you find someone who is knowledgeable and cares to help you!!! You have been dealing with these issues for 8.5 mos. now and that is a LOOOOOOONG TIME to deal with it. You must be exhausted, or maybe you're at the point where you think, life is just like this and go through the motions...
My heart goes out to you and all other parents dealing with these issues. What is the deal with these "experts" who won't listen??? I am SO depressed and demoralized when I think back to how long my DS has been dealing with pain from GERD and some variety of feeding issues! Whenever we reported various "problems" to our ped. we would get the "first time parent" brush-off, and instead of standing our ground and pursuing it, I confess that we gave up thinking WE were the problem.
This can be DANGEROUS because- now we know- that when a baby drinks or eats and gags or chokes a lot, sounds raspy/congested, etc. he/she could be *penetrating*, *micro-aspirating* and/or *aspirating* liquid and/or food into their airway/lungs. Aspirating is can be very dangerous- anywhere from damaging the child's lungs, causing pneumonia and other complications, interfere with breathing, and worse case scenario, cause them to stop breathing. I DO NOT WANT TO SCARE ANYONE, but I am mentioning this because I think it's the best reason to investigate ASAP and either RULE OUT or TREAT the dysphagia.
We had to learn this by reading medical literature because by 8 mos. our ped. finally recommended we do a MBS to rule out aspiration. When I asked her what that was all about, she actually told us NOT to worry about it and to NOT go read about it because we would just worry ourselves!
Common "advice" given to us (and others, apparently) from the "experts":
Re drinking/eating:
>> if the baby's not eating much, maybe he/she's just not hungry; try waiting longer between feeds; wait until he/she cries to tell you he/she's hungry, etc.
Why this can be a problem:
if a baby has GERD and/or dysphagia, getting upset and crying can make it worse; they will limit or refuse their intake even though they are hungry; etc.
Re crying when going down for a nap:
>> you are responding too quickly/frequently to the crying; try letting him/her cry it out; tire him/her out more before nap time OR maybe he/she is overtired so put them to bed earlier; etc.
Why this can be a problem:
if a baby has GERD, laying them down flat (even on belly) can worsen the pain as the stomach acid comes back up into the esophagus, PLUS getting upset and crying can make the reflux and pain worse.
I think I'll stop for now, but I could go on and on about the advice we got whenever we reported a problem to the ped. At 5.5 mos. he had dropped from 75th percentile in weight (at 2 mos.) to 10th, and finally, the lack of drinking was taken seriously, but the advice was "start him on solids."
Basically, because we didn't pursue our problems earlier, the reflux worsened once on solids because he was ingesting more (at first) causing more reflux. It eventually led to today, where he still has a mild aversion to both bottle and solids despite therapy. We are still pursuing avenues of recovery.
Note: untreated GERD can irritate and even scar the esophagus, which can lead to (or worsen) dysphagia.
Alternately, dysphagia can be due to a baby not developing a good breathe-suck-swallow technique whether they are otherwise healthy or not.
Note: one thing my husband and I implemented as soon as we'd educated ourselves about dysphagia was switch DS back to a level 2 nipple on his bottle. Within a day, his wet/raspy chest sounds almost disappeared. No expert suggested this, we just figured, "if the formula comes out slower, maybe he can handle it better."
While I'm at it, here is our current dilemma:
DS is on a level 2 nipple which has helped tremendously. However, both the ped. and the speech therapist recommends that we thicken his formula so that he will swallow properly and never aspirate. But if we thicken the formula, we need to increase the nipple size => which he does worse on, PLUS he does not like getting thick liquid out of his bottle. So, I'm wondering, how long do we try the thickened liquid before we give up if he either refuses to drink and/or sounds wet/raspy again because of the bigger nipple?!
Hope some of this was helpful. If anyone has advice for me, please help, thank you!
-Christine
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Hello :) :) :) :) :) :) :) :)
I just wanted to write and say my DS the little boy i wrote about at the beggining of this section has just had his 4th birthday.....
THANK YOU SO much I still remember thoose early days of dispair and this post and Luke N Me really helped me ask the right questions and get the right answers, My Ds is still a little fussy but is 2 stone 4 and full of mischief ;D...
Take care everyone who reads theese posts, its horrible what you are going through....
I gave birth to my DD and she is now 10 months just crawling ..... as hard as the early days are enjoy they go SOOOOO quickly and never give up on your instincts and never be too frightened to ask the questions to the doctors xxxxx
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Debonair,
Thank you so much for posting your update :-*
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Yesterday and today I managed to read through this whole post, and I'm glad I did! While I wish you ladies didn't have feeding problems with your LOs, it is nice to know that I am not alone...
Here's my LOs story... Luke is 5 months old and about 16.5 lbs. He was a great eater for the first 2 months (formula fed). Just around 2 months, he started fussing on one bottle a day... then 2 bottles... and gradually, he was fussing on all bottles, except his 11pm dreamfeed. By fussing, I mean squirming, arching, turning his head back and forth, screaming out, failing arms, etc. He takes about 1-3 oz and eventually, he just refuses. We also have to feed him each of his daytime bottle twice in order to get this much into him. Over time, we have gotten to a position where he can't even eat in our arms at all anymore during feedings, and we actually try to feed him lying down in his crib to keep him as drowsy as possible, since like many (all?) of your babies, he eats much better when asleep.
We have tried almost everything at this point... we changed bottles (Dr. Brown - helped for about a week), changed formulas (soy, nutramigen, no dha/ara - only the Enfamil Thickened (same as AR in the US - I am in Canada) has really worked for us at all), tried different feeding positions, Zantac... probably more things too that I can't think of.
Up until a couple of weeks ago, we could still always somehow get 20 oz or more into Luke each day. We also thought the Zantac was helping since we saw and increase in his intake for a few days after it (he even hit 30 OUNCES one day! which is something he hasn't done since he was 2 months old!). Now, for the past few days, we are only getting 15-20 ounces into him, and that is with most of it coming from a dreamfeed. Today, it's 9pm, and he's only had just under 10 oz :( and we only have the dreamfeed left. So things are certainly getting worse, not better. He is getting to a point where he gets nervous and fussy as soon as he sees the bottle. Since he feeds better sleepy, we are at a point now where we are going to start waking up at night to feed him an extra bottle (so backwards - to have to wake up even when you LO sleeps through the night!). He has also been terribly constipated for about 2 months... hard, dry, fully formed poos.
Our doctor does not take is seriously. She says as long as he's getting 20 oz, not to worry. She doesn't even believe he has reflux or anything and even the Zantac we got from another dr while on vacation - she didn't think it was necessary). Well, now, since the last time we saw her (3 days ago) he is taking even less than 20. We don't want to go to her again and are trying to find another pediatrician but it's hard here in Canada since many are not taking new patients and you can't just go and pay for service. Luckily, DH's brother in a dr in the US and he knows a dr here in Canada as a great kids hospital and is helping us get Luke seen there... we are hopefully going to get a referal tomorrow... fx...
I think Luke has the symptoms of dysphagia and probably some reflux too, especially since the Zantac helped so much for a while. We are hoping to get the mbs (I'm glad I know what to ask for - thanks ladies!) to find out for sure what his problem is. And while we have been giving a thickened formula, I have also ordered Simply Thick to try out instead since so many on here have had success with it. We are also hoping to get Prevacid instead of the Zantac since he did show improvement on the Zantac but we think he needs something stronger.
Any input on what you think we should be doing is great... my one main question is about feeding him laying flat in his crib... we do this to keep him drowsy and we do get better feeds out of it... but is it safe? and is that even a normal way to eat? I know I can't drink lying down so I'm wondering if Luke should be.
Thanks for this post... I loved reading it. ANY input would be great.
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Just wanted to offer some hugs as I know how you feel. Have you had your LO checked for tongue tie? Not all health professionals look in bubs mouth when they are young...they certainly didn't with mine! (I am tongue tie in the brain since it was diagnosed! ::) )
I only ask as this is the reason my LO is a fussy feeder and I didn't start seeing quite how bad it was until after he was 2 mos old. I thnk this is because he was so young and feeds could be quite sleepy anyways. At the moment I am the sameas you...lucky if I get the 'proper' amount in him. I rely on the dreamfeed for getting calories in. I wouldn't think you have to wale him in the night for feeds, if he is hungry he will let you know all about it!
Have you tried using a different teat flow? This is always a nightmare for me as he doesn't respond well to any little changes in feeding regardless of whether he needs them or not! ::)
I am sorry you are getting no help from your doctor, I have also been there myself. Your LO may have a negative association with the bottle due to the reflux. It can be so hard but you are not alone. I dread feeding times which doesn't help ds at all as i'm tense too. I am so exited about starting solids and reducing those bottle feeds.
Emma xxx
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Brodiesmummy - Thanks for the response! I will ask again about him possibly being tongue tied. He was checked at birth, and now that you mention it, I think they said it was "not too bad" but who knows what that means! What are the symptoms of being tongue tied? Do they fit Luke's behaviours?
We have also definitely tried different nipple flows... I actually moved back down to Level 2 (Dr. Browns) after reading this post since I thought maybe it would be easier for Luke to control the flow. I hope it works out!
And we did wake him to feed last night... we can't wait just until he's hungry to feed him... he never behaves hungry and would probably wait 6+ hours to complain if we didn't feed him. I think that's past of his condition (whatever condition he has!)... he is averse to feedings now. :(
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Going up a teat size would be difficult if your LO has a tongue tie as thay cannot 'latch' on to the bottle properly. Many health professionals believe that it does not pose a problem for bottle fed little ones but I can tell you differently! When we got the reflux sorted out he was still a terrible eater. i thought it was aversion to feeding due to pain in the past but my gut told me something else was up. I got it checked and it was confirmed for me not too long ago. The midwife said it was significant enough to make bf'ing a huge prob and bottle feeding could be difficult.
My LO also never cries for food which is why an eating schedule suits us...otherwise he would never eat! Some tongue tied babies get so tired sucking on the bottle as they cannot suck properly that they will stop before they are full.
Can you LO stick her tongue out?
Got to run...feeding time.
Emma xxx
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Luke has stuck his tongue out in the past, but does not do it frequently. Did you get your LOs tongue tie corrected? Or do you just have to deal with it? And is your LO back to being a "normal" eater now?
Luke does LOVE his pacifier... would that be the case if he was tongue tied?
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Mmmmm...not sure about the paci.
Some tongue ties can stretch and be ok. DS's has stretched and he can now stick his tongue out a bit better. In the beginning feeds were messy and alot of milk would end up down his chin but I guess the older he gets, the more used to it he gets and now feeds are not too messy. He has found his own technique for eating but he does 'click' and 'squeak' alot whilst eating!! He is by no means a normal eater and some days can eat as little as 20oz. He is getting better slowly though.
I am not getting it corrected as he os 6mos now and the bottle feeds will be be decreasing soon ( yay!). The pead has told me that he shouldn't have speech probs. i hope that is the case for us.
My friend who had a severly tongue tied baby said she loved the paci as it gave her opportunity to 'rest' her tongue. Her dd's tongue tie was really bad though and she said before she got it clipped her tongue could not touch the roof of her mouth. Mmmmmmm....
Emma xxx
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I think more of Luke symptoms fit dysphagia and reflux... but I will for sure get the tongue checked, too... we are hoping to get into a specialist VERY soon... here's a pic of Luke with his tongue out. Taken around 2 months (right when his feeding problems started).
(http://photos-g.ak.fbcdn.net/photos-ak-sf2p/v652/87/40/504485248/n504485248_5897742_1568.jpg)
Would he have been able to do that if he were tongue tied?
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Brodiesmummy - I just checked, and Luke can definitely stick his tongue out. But when I was checking, I felt a tooth! I am now praying that that is why he has dropped to 16 oz a day right now... I know he has a feeding problem, but maybe the tooth coming through has made it worse temporarily. I would love to see him back at 20 oz at LEAST asap.
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He is one cute baby! ;D
I am no expert but I would say thathe probably wouldn't be able to stick his tongue out that far if he had a tongue tie. Sorry if I confused the matter and got you worried needlessly. :-[
Alot of babies do get a decrease in appetite due to teething. Poor wee soul.
Emma xxx
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Awwww thanks for the compliment on my LO!
Thanks for bringing up tongue tie anyway... I am pretty sure he doesn't have it, but I want to rule out everything now so we can figure out the problem.
So far, the level 2 nipples seem to be working out better than the 3s... we also have Simply Thick ordered and should get it late this week or next week. I am hopeful that some of this will work out!
Also, my DH faxed a bunch of info to the dr. we saw on vacation to try to get our referal to the children's hospital here... I hope it works out!
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Huge hugs,
I am sorry you are having such a rough time with feeds for your lo, and even more having such a hard time getting the doctors to listen.
A lot of time, I find is that the DR's do not want to say much about Reflux etc, as they do not know much about it. I really hope that you get some answers from the new doctor.
Emma has given you some fantastic advice, and it is definitely worth getting your lo's tongue checked to rule out a tongue tie.
Also with regards to the zantac, I am sure that this meds dosage goes according to your lo's weight, so your lo may need it adjusting due to having putting on weight.
With regards to teething, yes this could definitely be the reason why your lo is a lot more fussy. When they teeth, apparently this can cause their reflux to flare up.
Feeding your lo laying flat in the crib, this is not advisable, as it can be a chocking hazard, and can also cause ear infections, as it can cause fluid to be trapped in the ear canal. I know you say that it is easier to feed your lo when he is sleepy, but perhaps, you could prop him on a cushion to ensure that the is not completely flat.
Please keep us posted on how things are going. And yes, I have to agree with Emma, your lo is really cute.
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hello,
i am so glad i stumbled on this topic b/c i had never heard of dysphagia and am wondering if this is what my DD has. Shes 4 MO and at her recent well check had dropped from 25th percentile to the 10th and Dr. suspected silent reflux, so she has been on Prevacid (liquid compound) for a week but we have seen no changes yet.
She has always been a slow snacker of an eater, but in the past month or so is when we have started seeing the problems. Is it possible for Dysphagia to start to show later around this time?
She also has mild laryngomalacia and I wonder if this is tied in with this Dysphagia/reflux problem. Seems like it would be.
She definately eats better when sleepy- like her middle of the night feedings she never fusses, but lately always fusses with daytime feedings. A complication is that she is BF and HATES the bottle that DH has to give her on weekends, and it takes him all day to get a few oz. in her. But the rest of the week I BF so I cant really thicken the milk....so should I switch her to exclusive bottles for 48 hrs. to get her to take them better so I can try thickening? She will def. protest, but is it for her own good?
This is so frustrating....Pedi. didnt even mention Dysphagia as an option. Her symptoms fall more in line with this than reflux. She cries right at the start of a feeding, not afterwards.
I just started giving her a little rice cereal after BF just to try to get a few more calories in her and she really liked it! I was surprised, as I always thought shes just not really a hungry baby. But now it makes sense, as the cereal is thicker than BM so it prob. doesnt aggrivate her airways as much...She weighed 11 lb 7 oz at 4 mo. wellcheck and she was born weighing 7.5 lb so shes way underweight! Please advise on this to let me know what you think...
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Hi and welcome to the BW website.
It does sound like reflux to me.
You say that your lo has only been on the meds for 1 week now, it can take longer for the meds to kick in and also for your lo to stop associating feeding with pain.
I think that Prevacid works on your lo's weight, so it could be that your lo is not getting the right doseage for her weight. Also with reflux meds it is trial and error and what does work for one lo may not work for another lo.
If you want to continue BF, I would do so, it just means that you need to find the right med that works for your lo. You could wean your lo, and find that the thickners don't make any difference to your lo and she may still end up needing meds.
I definitely suggest popping over to our Colic and Reflux boards, they ladies over there can give you some great advice.
Huge hugs xx
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Hi all --
Between tears and after reading the thread about this, I think this is what my DS has and he is 3 months old already. It takes us 50 minutes to get 2 oz down sometimes (today being one of them) then he doesn't sleep very well and then takes the whole bottle (4oz) at next feeding because he is asleep for most of it but still will cough and sputter. He is nasley and wheezy. He is also been grabbing his right ear lately. it's been this way from the beginning. They called it reflux and we are on zantac. Then it was lactose intolerant and we are on hypoallergenic formula (and I do think this has helped) and he has gas issues so I put him on probiotics. His biggest feeds are the dream feed, night wakings, and any during the day when he is sleepy. :'(
I had a question about this disorder. Do these kids have a lot of gas as well? ??? I just wonder if he is so gassy from the struggle to eat.
I have a call into the peds office and hopefully we can get a MBS early next week to see if this is what it is.
Thanks for the previous posts -- I really appreciate it and wished that I had seen it sooner. Deep in my heart I always knew it was something more than reflux as he is happy as a clam after he eats and only really fusses during eating and he eats only what he has to unless he is sleeping.
Thanks in advance for your help
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more questions and comments....
Is simply thick lactose free?
We did a regular barium at 6 weeks (DS is now 12 weeks) and it showed that everything was normal as well. We told him he is coughing, etc... but no one brought this up. When the nurse from the peds office called me back today she knew what it was -- so why didn't they mention this? I think it will be a matter of time before he is just eating enough to sustain himself. My ped was out this week, so they are going to call me on Monday. My hopes is that we can get a MBS next week and an appt with a therapist to figure this out.
Thank you, thank you, thank you! You have given me hope! ;D
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okay -- I'm a complete space cadet but I have another question. ???
We are currently using Dr. Brown's bottles (after trying 4 other kinds and many $$ down the tubes) with a level 2 nipple. Will we have to switch to a faster flow once we thicken?
Thanks! ;)
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This thread speaks to me.
DS was diagnosed with silent reflux at around 8 weeks. He had problems latching at the get go and so we had to supplement at the hospital before released. After no success even with lactation consultation, we then had to move him to Nutramigen rather quickly when it became apparent that every feed was causing him pain. He was put on Zantac at 5 weeks but after being on the full dosage and that having no real effect, ped moved him to Prevacid (only after taking him in twice and feeding him at the office so they could see he's not just a fussy eater!)
After reading this thread, I am more convinced that reflux is not the only culprit. He has always fed better at night - not just better but one might say 'normal'. In fact, in the beginning we had a night nurse (due to sleep deprivation and my PPD) and they never could understand why we had them there because he fed well at night and went back to sleep. What they didn't know is that ALL DAY LONG it was a battle to get him to eat and nap. He was always in discomfort. Therefore, 'sleep when your baby sleeps' did not apply to me. There was no sleep - there was only lots of AP and tears.
He is 16 weeks now and on Prevacid solutabs 7.5mg x2 per day.
However, now at almost 4 months, he is becoming even more difficult to feed. He is grunting, flailing and struggling on the bottle. Crying and in obvious discomfort...AGAIN. Every burp is a spit up now.
I just wonder if I should be pushing for this MBS or not. When we first fed him at the ped, she sent him for an abdominal ultrasound due to his reaction to feeding - she thought it seemed like pyloric stenosis but it was contraindicated because he was not vomiting. It came back normal - which I was actually sadly disappointed with at the time because then there was no simple answer or fix for the problem. All just trial and error.
Also, he had his meconium aspirated when he was born - a big tube shoved down his throat. Could that cause some kind of swallowing issue?? I have mentioned this before to ped but it seems to be discounted.
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Okay - me again and desperate for help!
Today was a complete nightmare. The first part of the day was gasping/coughing, etc... and then refusal to eat. We went to the Craniosacial Therapist who put her finger in his mouth and said he is not sucking right. Really? - I hadn't thought of that! >:(
So found simply thick at a pharamacy across town - made DH go get it. We tried 1 packet of nectar with 4 oz of formula like it says in a Dr. Brown's bottle and shook it like it said. SO MANY BUBBLES! :-X DS took a couple of oz and then quit like usual. He even coughed and gagged on the nectar thickness so I'm assuming we need to go thicker. I'm scared though so will wait for our MBS which I hope is early next week.
Also, I don't think the Dr Brown's bottles can handle this stuff -- the resivour (sp) seems to get all clunked up. But they have really helped with the gas so does anyone have any recommendations on a good bottle to use with the simply thick that will not cause gas issues?
Also has anyone heard from Luke-n-me lately? I'd love for her to comment on my issues.
Thanks everyone!
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me again -- it's sunday morning and I just got back from the peds office. They said, "yeah, it shouldn't be that hard." and "he isn't the biggest of babies but he isn't failure to thrive yet." and "what would you like us to do?"
I wanted to either strangle someone or start to cry. :'( I don't know how much more I can take.
The only good advice was to take him to a feeding clinic at the children's hospital. I'll call today to see if I can set up an appt for tomorrow.
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OK, that stuff and Dr Browns probably won't work well. When we used it, it was with a simple bottle and a fast nipple. For some reason silicone worked better than latex nipples. Big hugs!!!!!!
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I have no helpful advice, but I just had to add some ((hugs)). I think seeing a specialist would be a great next step.
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Have been sitting on this reply since the day the site crashed. So here it is - better late than never....
Now I know the title of this thread includes "a possibility other than reflux" but I do want to point out a couple of things related to reflux.
Reflux babies notoriously eat better when they are sleepy. They don't seem to be as aware of their surroundings and consequently don't make the connection between feeding and pain that they do when they are awake. Once they are taking more at night than during the day it is termed reverse cycling. My DS2 took up to 75% of his intake during the night and when he was just awake until I got his reflux under control with medications and then gave him time to unlearn the association.
sleepyhummel - Firstly a huge pile of (((Hugs))). This is a horrible time for you and I wish I could say or do something to make it better. I do want to give you some suggestions that I hope will help you.
Firstly if your DS is still on Zantac it sounds like he has developed a tolerance to it (very common in LO's) and needs to be on different medication. There is another group of medications called Proton Pump Inhibitors that work in a different manner than Zantac but the end result is the same. The common ones that I've seen used in LO's are Omeprazole and Lansoprazole. The chances of tolerance developing in LOs on a PPI are very small.
He may also benefit from a medication to speed the progress of food through his stomach so it isn't there long enough to come back up. The 2 most commonly used ones are Domperidone and Metoclopramide.
If the LO has latching/sucking issues then please, please, please get them assessed for tongue-tie. I know it is mentioned earlier in the thread. I also know that the general thought is that a bottle fed LO shouldn't be affected by a tongue-tie. This isn't always the case. And if the tongue-tie is located in such a place that the LO cannot co-ordinate their sucking and swallowing, then it stands to reason that they would choke on their food. I wonder if this was the original issue for you Wendy, and if it still is.
I'm no expert on formulas. But from the mothers on the Reflux board and from doing some researching on-line about them, this is what I found. I borrowed this info from this website http://foodallergies.about.com/od/adultfoodallergies/p/hypoallergenic.htm as it is worded very well and seems pretty easy to understand.
Hypoallergenic formulas come in three main varieties: partially hydrolyzed, extensively hydrolyzed, and free amino acid-based. Hydrolyzed formulas have had the larger protein chains broken down into shorter, easy-to-digest proteins, while free amino acid-based formulas do not include protein chains at all but rather contain all the basic amino acids. Partially hydrolyzed formulas differ from extensively hydrolyzed formulas in that their protein chains can be longer. Alimentum, Nutramigen, and Pregestimil are among brands of hydrolyzed formulas, while Neocate, Elecare, and Nutramigen AA are amino acid formulas.
If your LO has a particularly sensitive stomach and intestines then maybe the partially or extensively hydrolyzed formulas are still exposing them to enough cows milk proteins that they are reacting. I know the amino acid formulas are sometimes only available by prescription and that they are expensive. But if it's that bad, IMHO cost becomes irrelevant.
If your LO has a milk protein intolerance, they may also have a condition known as eosinophilic esophagitis. This condition is "resistant" to all reflux drugs. These two pages have information about this condition http://www.allergycapital.com.au/Pages/Eosin_Esophagitis.html
http://www.apfed.org/downloads/EE_Information.pdf
And one of our 'seasoned' reflux mothers has a DS who has eosinophilic colitis. Her story is on this page http://babywhispererforums.com/index.php?topic=107244.0
In terms of the blase attitude and the "he isn't the biggest of babies but he isn't failure to thrive yet" comment, it makes my blood boil. It is totally unacceptable to wait until a child is in the catagory of failure to start to 'panic'. Once they reach that stage it is a hard work to get them to eat etc as they have usually developed severe food intolerances/aversions etc. Keep going back to the doctors. I would even change doctors if you can and especially if you don't feel that this particular one is listening to your concerns and taking you seriously.
Ok. This was supposed to be a short note and is now an epistle. Hopefully there is something here that helps someone.
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Hey everyone - it's been a while since I've been on because of the site being down,etc... here is what happened:
Went to feeding clinic - she said his reflux was not under control and that he was really gassy so we should have the checked out (duh!). Then she told us to use this super hard nipple because his suck was weak, etc... so I ran out and bought all new nipples, etc... This made my DS STOP EATING completely. More crying from Mom.
That same weekend, I had a lactation consultant come in. She put her finger in his mouth and immediately told me that he had a high palate also known as a 'bubble palate'. She said that these kids can't use regular nipples very well because they can't latch on to it properly. She had some ideas for kids who were breastfeeders (Aidri bottles) but not for those that had always been on a bottle. She said to go back to the Dr Brown's feeding system because at least it was getting into him. So back we went. I wanted to try the Aidri anyways, so I went and bought 2 ($18/piece) and a haberman ($30/piece). Neither worked.
Then we went to the Dr's office for a weight check and saw our regular pedi and she confirmed the high palate. She said usually a haberman or a NUK nipple worked for these kids. I told her that we had tried both and the haberman definitely did not work but the NUK sort of did. Then it dawned on me and I asked, "Latex or Silicone?" She commented that if his pacifier was latex (which it is) then we should try that since the Silicone did not work. So off we were again to frantically purchase latex NUK nipples and get them sterilized before the next feeding.
We tried it -- IT WORKED. We still use some chin support but he does not get the air in that he did before at all and he eats awake just fine now. I am shocked and disturbed that it took me seeing 6 pediatricians, 1 children's hospital ER doc, a children's hospital feeding specialist, a chiro, a cranosacial therapist, and a lactation consultant before someone even mentioned a high palate to us. I called our Dr's office almost every day and pretty much went in every week -- NOT ONE Dr checked this until I asked them to. I am now trying to figure out how to change this so other families and babies do not have to suffer. Any ideas? I also want to write a post and thumb tack it so others can see it and get help from it. It is so simple to check for.
BTW: He is milk protein intolerant and we are on hypoallergenic formula. I also think the Zantac works for him because he sleeps like a champ and our Dr said he wouldn't sleep if it wasn't working.
Thank you thank you thank you for everything!! I have referred many people to this board. Everyone is so great and very supportive!
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I am so pleased that you have eventually gotten some answers :-*
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How great to catch up here and read the positive update!
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Hi there
I just wanted to leave a short note to say I am the lady at the beggining of this post and my ds started school a few weeks ago I remember those early days and for us there is deffinetely light at the end of the tunnel he had a fantastic report from
School doesn't stop eating and is the life and sole wherever he goes he does have asthma and is on strong inhallers but it's managable he rarely drinks milk interestingly any way to. All u mums who are struggling at the moment hugs and keep with your insticts and never give up asking doctors questions :-) x x
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Thank you so much for posting your positive update. So pleased that your DS is doing so well.