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Digestive Disorders Message Board


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Please Help!

I have a 7-year-old son with severe autism who can not tolerate solid food. He's been on E028 Splash (complete GI liquid diet; i.e., feeding tube food that he takes orally) for the last 4 years with no end in sight. He does well on it, but he'd really like to eat food and out lives would be much better if he could eat food as well.

He is non-verbal and has no effective means of communication so can not tell us what exactly is wrong, but he's clearly in pain a few hours after he eats food. His stools are generally normal and regular, though once in awhile they are hard pebbles and once in awhile they have a lot of mucus on them. He never has diahrea (unless there's a virus going through the house). If he starts vomiting from a virus going through the house, we usually end up in the ER for hydration since once his GI system gets messed up like that, he can't seem to stop vomiting.

He's had a ton of tests (blood, scopes, pill cam, stool, etc.) but nothing definitive has been diagnosed. His first scope at 3 years old showed severe ulceration throughout his lower esophagus, stomach, and duodenum. He was vomiting denatured blood from the clean out. One blood test showed a single marker for inflammatory bowel disease, but everything else came up negative for Crohn's or UC.

We've tried food on and off over the years (all food, a subset of food, a single-food-for-a-week trials), but when he eats, he stops sleeping and gets very aggressive and self-injurious from the pain. He is miserable and he looks miserable too. He gets black circles under his eyes, looks gaunt, vomits up the food sometimes, and the skin on the soles of his feet and finger pads and palms gets these deep cracks and fishers, his cheeks get very red and blotchy, and sometimes the back of his hands swell and get red like an allergy.

Surprisingly, he hasn't suffered from failure to thrive, although he is on the low end of height and weight, but still growing. He does very well on the E028 Splash but it's not very conducive to how humans live and impacts our lives tremendously.

Any thoughts would help. Maybe he has some rare GI disease. I'm looking for ideas. We've seen neurologists, pediatric GI docs, dermatologists, rheumatoid arthritis specialists, allergists, autism doctors, you name it. We have no diagnosis and are out of ideas.

My two goals for my son are (1) find a way for him to communication and (2) enable him to eat food.

Thanks,
Chris





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