Author Topic: Fussy Feeders - Dysphagia - a possibilty other than reflux  (Read 93732 times)

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Offline rooby-rooby-roo

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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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« Last Edit: January 23, 2006, 22:00:27 pm by Noelle »
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Offline Debonair

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Hi Question ?/
« Reply #1 on: June 03, 2005, 20:59:53 pm »
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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Offline Luke-n-Me

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Fussy Feeders - Dysphagia - a possibilty other than reflux
« Reply #2 on: June 05, 2005, 21:21:21 pm »
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?
Nancy

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Offline Luke-n-Me

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Fussy Feeders - Dysphagia - a possibilty other than reflux
« Reply #3 on: June 05, 2005, 21:25:33 pm »
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!
Nancy

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Offline karen_m3

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Dysphagia question
« Reply #4 on: November 01, 2005, 02:10:28 am »
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

Offline Luke-n-Me

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Fussy Feeders - Dysphagia - a possibilty other than reflux
« Reply #5 on: November 01, 2005, 02:28:12 am »
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!
Nancy

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Offline lilfrankie

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Fussy Feeders - Dysphagia - a possibilty other than reflux
« Reply #6 on: November 01, 2005, 04:48:29 am »
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.

Offline Mum to Ella Rose

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Fussy Feeders - Dysphagia - a possibilty other than reflux
« Reply #7 on: November 01, 2005, 05:12:41 am »
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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Offline Luke-n-Me

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Fussy Feeders - Dysphagia - a possibilty other than reflux
« Reply #8 on: November 01, 2005, 15:01:32 pm »
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!
Nancy

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Offline Rap

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Fussy Feeders - Dysphagia - a possibilty other than reflux
« Reply #9 on: November 01, 2005, 15:06:00 pm »
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
Rap

Offline Luke-n-Me

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Fussy Feeders - Dysphagia - a possibilty other than reflux
« Reply #10 on: November 01, 2005, 15:13:49 pm »
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!
Nancy

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Offline lilfrankie

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Fussy Feeders - Dysphagia - a possibilty other than reflux
« Reply #11 on: November 03, 2005, 04:55:13 am »
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!

Offline Luke-n-Me

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Fussy Feeders - Dysphagia - a possibilty other than reflux
« Reply #12 on: November 03, 2005, 15:08:36 pm »
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!
Nancy

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Offline maryh

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dysphagia?
« Reply #13 on: December 02, 2005, 08:30:25 am »
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

Offline Luke-n-Me

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Fussy Feeders - Dysphagia - a possibilty other than reflux
« Reply #14 on: December 02, 2005, 14:03:49 pm »
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!
Nancy

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