reflux and food aversion

Hailey had a severe breast bottle aversion- total refusal of oral feeding while awake starting at 2 months. We had to start sleep feeding. Solids were also problematic- she would scream when she saw the spoon. Also didn’t like cup feeding. We started feeding therapy at 8 months and continued until 15 months. We had reached the point where she could drink from a cup and could eat various textures of solids, finger fed herself. BUT the volume was very very small, and she was a very fussy eater. She stopped sleep feeding at age 2 and was off bottles all together at 2.5 years old. We always have to worry about weight and it’s very hard to get her to eat anything then the four or five things that she likes… even that is of a small amount. I would ensure that your lo is on a good dose of PPI, and see a GI if you’re not already. Then I’d consider feeding therapy. It was a long road, but we couldn’t have done it without professional assistance.

I live in Canada, so our system is a bit different. Where are you located? Many have used EI as a starting point for feeding therapy. It’s good b/c they’ll come into your home and that’s always more natural for a little one. They’ll also do a multidisciplinary assessment and see what kinds of therapies are needed. We had feeding therapy done initially by an OT and then by an SLP- those are the two professionals who usually do it. I personally preferred the SLP because she was able to give us good perspective on an oral motor assessment to rule out any problems there. I’m an OT so I probably shouldn’t say that. I think what really matters more than anything is the quality of the professional and they do vary within disciplines. There are good and bad, and you have to find one that fits with you and the approach that you like. There are also feeding clinics within most major cities that will use a multidisciplinary approach- you go there and they watch your child eat and do an evaluation. If you give me more info- like how old your child is, what symptoms, what feeding problems, what help you’ve had before, what meds if any, how much, what type, and where you’re located, I can ask around for you.

I hope this doesn’t sound harsh, but I’d get a new GI. I know someone in New York who used to post on this site, and her ds had a feeding aversion as well. She knows the system really well, so I’ll ask her to come and post a reply to you. But I still think that you should get a new GI. Just based on the script you’re telling me about the prevacid, I’d guess that it might not work well. Not to be a pessimist, but it’s really hard to make these compounds correctly. Check out the thread stickied in the meds forum about pharmacy compounded PPIs. Make sure that there’s no flavouring added whatsoever and that you don’t get a dose larger than a 2 week supply, among the other directions in that thread. How many mg/ml is it? It sounds like a very low dose. I’d guess that if you have to fight that hard to get him on a PPI, then your GI is probably not the right person. It’s really hard going through a feeding aversion, and you need your GI on board. If he has a milk protein allergy, then you should try neocate over alimentum. We had the same issue with my daughter and her feeding aversion. They told us that they didn’t even know if she actually had reflux and that it was behavioural. They said that she was on a high enough dose of PPI. Meanwhile, she had so much reflux pain that she had terrible Sandifer’s and she wouldn’t eat anything awake. I went through a lot of docs. Did your son ever have a modified barium swallow to ensure that he’s not aspirating?… I’m just wondering based on your comment about the problems with suck swallow breathe. Also, has he ever had an endoscopy done? That can look for damage and also allergic esophagitis and celiac, among other things. I do know that there are several feeding clinics in New York, but don’t know where, as I don’t know my US geography. Good luck. It’s really hard to go through this. One more thing I wanted to tell you is that we had so many docs saying that my daughter’s problems were entirely behavioural and it used to make me really mad. Of course there’s a behavioural component, but it starts from pain and the reflux really needs to be well controlled so that they can develop positive associations with food. Eventually we got a really good feeding therapist and she told me that almost all of her clients with feeding aversions also have reflux, and that’s not a coincidence. So the docs might say it’s behavioural, but it’s not a coincidence that he has reflux.

If I can’t get in touch with Thais to reply to this thread, then you can call the program at St. Mary’s and ask them for a list of other local clinics.

Isaac has had a feeding aversion from pretty early on. No one took us seriously for way too long and by the time he we is therapy it was really too late. We have a few weeks to get him eating or his dr will be placing a feeding tube. My best advice is to get help early and be persistant with the drs.

Hey! I just wanted to second Lori’s suggestion about the Neocate. The milk is probably responsible for the eczema, facial swelling and even the constipation. I do think you can order it yourself from the pharmacist, but it can be very pricey. However, if you do that, and see improvement then you can march over to your doctor and demand that he give you a prescription for it because it IS working! If you have a script for it, many insurance companies will cover (or at least help) the cost.

Tommy’s mom-