[amycurlygirl]

I'm hoping this is the right place to post this. I don't really see a specific reflux area, so here I am.

My son is 17 mths and has severe reflux. He takes 15mg prevacid, 2mg periactin, and 3ml of pepcid. We use mylanta. I give him liquid vitamins and liquid calcium. His diet is gluten, soy and dairy free. limited on sugars and corn.

He's at the best point he's been health and mood wise since he's been born, but our GI doc is concerned about his nutrition. He's on such a strict diet, but is gaining slowly. At least he's not loosing and he's growing. That makes me happy.

So, we tried to supplement with Alimentum. We had him on this before, but he wasn't as happy as he is without it. I tried it anyway, just to see what happened. It was bad after a weeek. So, the doc suggested Neocate E028.
He gave us samples to try. The second day of having 2/day, he had the most severe reflux attack I've ever seen him have. I wasn't sure it was the Neocate, so I gave him one a day after that. I noticed on day 3 he had a rash all over his face. Not itchy, just little red bumps all over.
I stopped the neocate and the rash is getting better. It's been about a week now and he's starting to sleep a little better now too. He was screaming/crying in his sleep about 6 times a night when I was playing around with these supplements.
It's just not worth it to me to be "trying" all this stuff. He's misserable when I do. He's less content and less happy during the day. He also has bowel issues when I mess around with it all.

I can't really figure out what would be in the Neocate E028 that would've caused such a horrible reaction.
Do any of you have any ideas????
I'm at a loss.
I can't seem to find anything to supplement him with either.

We have an appointment with an allergist at the end of October.
I know my son's diet isn't that great, but everything I try is not good.
He even at this point still cries/screams in his sleep. It's just only about 2-4 times instead of every half hour.
He also wakes up screaming (and I do mean screaming) every morning and after naps. That's just not normal. Every once in a while he'll wake up cooing and talking. That's how it should be. That only happens about once a month. It's really stressful on my husband and I as you can imagine.

 

[USAmma]

Hi! Wow that sounds like a tough situation.

Neocate is supposed to be for kids who are allergic to everything. Usually kids will tolerate it even if they have severe allergies because it's so broken down that the body doesn't recognize it as being allergens. That doesn't mean that it didn't have something in it that bothered your son. If he was also taking other things in his diet that day besides the Neocate I would think it would have been one of those things that caused his distress. Some GI's will suggest putting the kids on Neocate exclusively for a few weeks to let the body heal and then slowly introduce things that the child is not allergic to. It could even be that something in the meds are bothering him.

I think the allergist and GI can help you to eliminate possible causes for his reflux. My dd was and is occasionally still on Prilosec. It has worked better than any other med. Mylanta is not really great long-term for growing kids because it does something to the bones-- slows down growth or something. But it's okay to use once in awhile for break through reflux attacks.

Is your ds constipated? That can play a huge role in reflux and feeding and digestive issues. Even if he's going every day, he may have a lot in there that's built up, and then the stomach can't empty as fast and you get reflux and stomach discomfort.

I hope the doctors are able to help him. Maybe just put him on a strict regimen of meds and certain foods/formulas for awhile and wait and see. Prilosec, for example, takes up to a week to start fully working. Sometimes if he's having an allergic reaction it may take 2 days to fully manifest and another 2 weeks to get out of his system.

I wish I could offer you a magic solution but I myself would have applied that to my dd if I knew what it was.

Good luck to you!

 

[amycurlygirl]

Thanks for responding so quickly.
He's been on his meds for quite a while and he was doing ok until I started messing with supplementing. That's when he got constipated. I am normally able to keep his bm's consistent with his strict diet. I make all his foods for him at home so I can control what they are and know exactly what he's getting.

The mylanta we don't do too much at all. Maybe once/twice a week. Mainly when for some odd reason like you said, he has reflux breakthrough.

He's on such a controlled diet that it had to be something in the neocat E028 that set him off. And boy did it set him off! There wasn't anything else food or otherwise that would have done it.

I feel like we can't hardly wait until the allergist appt.
He's been on this diet for about 2-3 mths now. There's something I'm not catching for sure because he's still night waking, refluxing, irritable. Just not near as bad as before. I just know he could be much better. You know?

One thought I had was fructose malabsorbtion. Ever hear of it? The GI didn't really think it was an issue when I mentioned it to him. Although he doesn't think gluten is a problem for my ds and it clearly is. They can't possibly know everything. I did read about fructose malabsorbtion being similar to gluten intolerance.

A magic solution... now that sounds wonderful