I feel like I am losing my mind!

[Anonymous]

My son is now 19 months old, weighs just 20.2 pounds and is on
22.5mg of Prevacid Solutab, which is taken 7.5mg 3xday. He is still
not eating! He is only drinking one 8oz box of EO28 a day. We’re
lucky when he actually drinks two. I know he is not getting enough
fluids. I am so lost as to what to do. He sleeps about 12-13 hours
at night, with some crying out but never full waking, so the reflux
can’t be bothering him that much at night. So, what is wrong during
the day? We always give him a variety of foods to choose from in
hopes that he will eat something, but all we get is a nibble here
and a nibble there. He had a feeding consult and the woman was
really worried about how is noneating would effect his development.
We have seen an allergist and he does not think he has any allergies
since he tested him and everything came back negative. We did try
milk as a test, which made him constipated and he started waking at
night. Is that not at least a milk intolerance? We have seen three
different GI doctors in hopes of finding one that communicates well
with us but no such luck. His regular ped office is better at
getting back to us, but they can’t follow his GI problems. At one
point we tried to get Zegerid, but the insurance wouldn’t cover it.
I’m thinking we need to push harder now. What does a mother do in
this situation? The doctors don’t think we are feeding him right or
not giving him the right things to fatten him up. We try, our son
just won’t eat! Any suggestions would be greatly appreciated.

Thank you,
Mom to Justin

[Anonymous]

I am sorry to hear about the problems Justin is having. Sometimes these doctors make me so mad! My daughter went to three different ped GI’s…and even the one I have now I am not in love with, but he was willing to let me do the things I wanted to do to help my daughter. Have you looked the the marci-kids.com website to see about his dosage? I know there are a lot of babies here who are on 30mg and even more of prevacid. Also, have you tried to petition your insurance company? That is what I had to do to get an exeption to have my daughter on Nexium and then Zegrid (yes, we have tried them all). As for the milk thing…the only symptom my daughter had was difficulty sleeping….she would wake several times during the night whenever I ate dairy (I am breastfeeding) and would have a hard time sleeping during the day. I don’t know if it was ever classified as a specific intolerance (no bloody stools or mucous) but I avoided dairy non the less, so it is at least worth a trial to see if that helps him.

[hellbennt]

J

Groupie Intro: my intro: https://www.infantreflux.org/forum/forum_posts.asp?TID=853&am p;PN=1&TPN=1

Babywearing: https://www.infantreflux.org/forum/forum_posts.asp?TID=1044&a mp;PN=1

[Anonymous]

My son was allergy tested and isn’t formally allergic to anything– including the long list of foods I’ve noticed problems with. Allergies are different from protein intolerances. And a child can have a protein intolerance well after age two. We just went back to teh allergist and I said that he had failed food trials at age two and was this normal and our allergist said that for kids with these kinds of problems, it’s often not until after age two, like between 2-4 that they begin to be able to tolerate the foods that have caused problems all along (although most kids outgrow these things by age one or 18 mos). BUT it is very common for them to outgrow nearly all of these intolerances, eventually. Is it possible that your son has food intolerances that are bothering his tummy and so he doesn’t want to eat?

Also, when my son was 20 lbs. he was maxed out on his dose of zegerid, with 40mg per day. It’s a high dose. It was the only thing htat helped him. We switched from prevacid to zegerid when things were really not going well. Luckily, I didn’t have to fight the insurance, but zegerid was a total god-send for us. I’m not trying to sound like an advertisement, but it’s the truth in our situation.

We ended up cutting all dairy, soy, beef and the final piece of our puzzle was gluten. Gluten is the stuff in wheat and other grains that gives them elasticity as bread dough. Rice is gluten free. Lots of kids have problems with milk, dairy in general, soy, wheat, fish, eggs, peanuts, etc. Have you ever tried eliminating some of these foods from his diet to see how he reacts? I didn’t do it until I was totally desperate, but it sounds like you are getting there. For dairy, it takes two weeks to get out of their system. I know you may not wnat to cut calories on him if he’s small already, what percentile of weight is he in?? Is the ped worried about his weight?

I would definitely push for zegerid if you can, and check into other food possibilities. Hang in there!!

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