Irritable Bowel Syndrome Message Boards

Hi there,

My two sons have been diagnosed with GERD and FPIES (Food protein induced enterocolitis syndrome) to soy and dairy. Basically they cannot process the proteins in these foods and if they are exposed to them colitis is the least of the problems they face.

My oldest son is 4 now. He went for over 2 years not being diagnosed, and by the time he was, he was stooling for up to 7 times per day, and didn't eat or drink anything. He was diagnosed as failure to thrive and ended up needing a feeding tube for awhile.

Now it is 2 years later. They are both doing well on a soy and dairy free diet. They both need duocal (a calorie booster) in their rice milk. My older son is on a medicine for his appetite as he doesn't have hunger signals. The way the team explained it to me was he was so young and felt so bad that his body went into survival mode and shut the hunger signals off. They say it could take another 3 years to try and regulate it. He has just within this past year started to say he is hungry which is huge for us!

I think that now that I know I have GERD and IBS-C I wonder if he does as well. He needs glyclolax (Like miralax) every day or he won't stool at all. His brother doesn't have this problem.

They have told me it is because he went for so long with damage that things are just taking a long time to come around, but it has been two years. He does have a GREAT GI doc (she is the one that finally diagnosed him and in my eyes saved his life) who is open to anything, yet she hasn't mentioned this...

Any thoughts? I am going to be taking them for follow-up in a few weeks.

Thanks!
Beth

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