reflux and food aversion

[Anonymous]

LORI — thanks for the message on the other board… i am almost never around anymore these days ( will PM you when i get a chance, just really busy, but Matthew’s site is closed and William is doing OK!).

Lori has done an amazing job at summarising everything! We live in NY, used to live in the city but are now in Westchester. My older son developed a feeding aversion very early on and was never interested in eating… seems like a combination of reflux and hypotonia for him.

Anyway, yes, you need a new GI — not sure where you are in Long Island but we go to Cornell — we see Dr Sockolow but she does not take new patients, but she has 2 associates and they are really good too, i hear. Dr Sockolow does believe that reflux can cause feeding aversions, so i am sure that the rest of the partners do too. The practice is not extremely agressive with meds but they are nice and welcoming…

You could see Dr Pittman at Mount Sinai — but her bedside manners are AWFUL. However, she is really agressive on meds… but i do not think it is worth it, you need someone who will listen and seh does not.

I would def try Neocate or Elecare… some babies do great on alimentum (my second son is on it and thriving), others do not, so you need to give an elemental formula a chance.

You are an SLP? Do you have any good EI eval centers around you? Otherwise, how about St Marys. It was an approved site for evals and we are in Weschester so i assume it may also be for you? They do have a feeding program there and the SLP that evaluated Matthew was really good.

What type of bottle are you using? Are you an SLP who specialises in infants? Sorry to be asking… i am not an SLP but have you tried a haberman feeder for example?

Aspiration and specially micro aspiration is not going to show on an Xray. There are children who aspirate who do not get aspiration pneumonia either… even teh swallow studies are not 100% diagnostic… some babies aspirate and it does not show until a few have been done. What you can do is get some simply thick or thick it and see if it makes a difference.

Like others said — you need proper meds + proper formula + to see an SLP that specialises in infant feeding. There are not a ton around though.

If you are willing to go private (vs having an EI SLP evaluate him), there are a couple of places you can call:

– the hospital for special surgery in NYC — they have great OTs and great SLPs… talk to them and see if they would check your son

– Lori Overland at Alphabet Soup in norwalk, CT is really well known and respected in feeding therapy field. You could call ehr office and see if they see infants or to get a referal for someone in your area

I think everyone gave you the right advice…let me know if a can help with anything.

As per sleep feeding — like everyone said, it is pretty common with refluxers to eat better when sleeping. My younger son is 4months… until a week ago or so, i could only feed him when he was sleeping… but things have now changed and he is eating pretty well; i am just hoping that he is a typical reflux kid and he just turned the corner… keep trying to feed while awake but never ever force it. I still feed William around 6-7 times a day, small quantities because taht is what he wants. Just set yourself a limit to feed when awake and if he takes one ounce happily, leave it at that and try 30min later…

[Anonymous]

Thanks so much! The bizzare part of this all is I am a feeding therapist. I actually work for St Mary’s (homecare, not the center). To be honest with you though, I have never seen a sleep feeder, i had never even heard of other sleep feeders until I came to this site (this site has been a godsend). I wasn’t going to go through EI because I know from experience that it has recently become a lot harder for children to qualify for feeding issues alone (they want to see 2 domains that are not age appropriate).

Most of my feeding experience is with babies 10 months plus. People think that just because I am an SLP who does feeding therapy, I shouldn;t have these problems with my son. It is so different when it is your own child. I really need an professional, an outsider, to come in and help me. I am so overwhelmed all the time and I just want to have someone else who is trained with babies to come and feed my son ( and maybe show me some things I haven’t tried) by the way…no one else can get him to eat, not even my husband who really tries, so all the pressure is on me all the time. I think I wil have to look for a private feeding clinic.

Thanks again for all your help!

[Anonymous]

Thanks for the helpful reply Thais! I hope that you’ve turned a corner with William and so happy about Matthew! Have you heard anything about Sarah?… I’m worried for her about Isaac.

Tommy’s mom- LOL!!! I’m so so embarassed!…Sorry, I didn’t catch the part that you’re an SLP, and a pediatric feeding therapist of all things! I’m sorry if I sounded like an idiot…. didn’t mean to!

I do know how you feel though about people thinking that you should know what to do because you’re an SLP… I had the same thing, because I’m an OT. But I do think that having the knowledge of the health care system and what’s right and what’s not as far as symptoms and treatments really helps. Hailey also wouldn’t feed from anyone else btw, and it was really hard… pretty much ties you to your baby. Our feeding therapist had seen a few sleep feeders but said that she hadn’t seen too many. She told us that she doesn’t think it’s that common only because most people who have kids that are so impossible to feed don’t reach that point and end up having to move to a feeding tube. But some kids will sleep feed and that sometimes becomes a pattern. That’s what it was for us, she wouldn’t eat awake and only somewhat when asleep. But, our feeding center we went to that was at a major hospital in the city, only had one nurse who had seen a sleep feeder before- the rest looked at me like I was a one eyed monster.

Hopefully you find a good doc and a good therapist to help. Good luck and keep us posted.

s&h’s mum2008-03-06 16:46:10

[Anonymous]

Please…no need to apologize. I wish you only knew how much help you have been to me. I finally have a “plan” and some hope. I was so alone before the information you gave me.

I will keep u posted. Words can’t thank you enough!

[Anonymous]

I am so glad Lori and Thais were able o help you out.

definately early intervention asap. My daughter was a sleep feeder as well,. I don’t want to sound despressing, but i found this site a bit too late and she ended up with a feeding tube. She is making progress with therapy now.

I hope with prompt help your son is able to eat more peaceful.

Leo

[Anonymous]

Sorry this is so long in getting to you but my son has actually started sleeping alittle so my posting time (middle of the night) is going away(hooray!!!) anyway….AIden had a SEVERE bottle aversion. WOuld only drink sleep fed from about 4 weeks on, and if he woke up during the fedding he was done! Even after his meds got to the right level, psycologically the damage was done….but he did WONDERFUL on solids!!!! Excpet oatmeal he just did not like it- I think bcuz for a while I had iti in his bottle and he remembered the taste!! But anyway, I would put formula in everything from ceral to fruit, veggies, etc…He would get a few hidden ounces/day that way. He just loves food and turned into a “new baby” once he was not hungry all the time. If he only drank a couple ounces of formula then I gave him some ceral with an ounce or two of formula in it. Which not only helped him, it helped me mentally also….I also started him on a cup at six months old (not a sippy) a regular cup andhe would take sips that way…He still perfers to sleep eat even at 1 year old but will take a bottle awake for the last 2 months or so (but will still only take about 2 ounces if he is awake).

ANyway, just wanted to share my story of a terrible aversion that turned out okay….

[hellbennt]

here’s a link to another feeding aversion post by lori, s&h’smum (no need to reply, just putting the link here for reference)

https://www.infantreflux.org/forum/forum_posts.asp?TID=12220&PID=101253#101253

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