Fussy Feeders - Dysphagia - a possibilty other than reflux

[B&BMommy]

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

[Luke-n-Me]

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!!

[jdipa]

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?

[Luke-n-Me]

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!

[little mans mum]

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.

[Luke-n-Me]

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!

[little mans mum]

Thanx for the relpy, I cant remember if i read it here or somewhere else, but can this affect development milestones?

[Luke-n-Me]

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?

[little mans mum]

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

[little mans mum]

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

[xxxkizzixxx]

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 !!!!

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

[Luke-n-Me]

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.....

[xxxkizzixxx]

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 .

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 . 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 )

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

[xxxkizzixxx]

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

[Luke-n-Me]

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!