Fussy Feeders - Dysphagia - a possibilty other than reflux

[Sarah - Enfys' Mum]

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! 

[Luke-n-Me]

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!

[Sarah - Enfys' Mum]

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.

[robinh13]

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-

[Luke-n-Me]

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!

[catgiggles]

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.

[catgiggles]

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!!

[Luke-n-Me]

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!

[catgiggles]

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!

[Luke-n-Me]

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.

[orbmom]

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?

[Luke-n-Me]

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!). 

[orbmom]

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...

[orbmom]

Of course today he had a decent day with 3 - 4oz feedings so far.  Makes you wonder if you are crazy...

[Luke-n-Me]

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!!!   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!