Need some help for my 16 month old!

New here! My 16 month old has had digestive issues since he was 1.5 months old. First they said milk protein intolerance and put him on Amino Acid formula. Then they said Food Protien Induced Entercolitis Syndrome as many foods seemed to make him have 10+bad stools a day, occult blood, mucus in the stool, occasional vomiting, and fevers sometimes with certain foods. He was hospitalized at 8 months old due to dehydration from excessive diarrhea after eating oats. We finally had scopes done and the initial results showed gastritis and lymphoid hyperplasia. After the biopsy results came back, the doctor emailed me to tell me that it showed acute colitis and it was more inflamed than he anticipated. He put him on Apriso (one capsule a day) for a few months, and then he said we will re-evaluate at his follow up. Since starting the medicine, my son can eat without any symptoms and has 1-2 formed normal looking stools a day. I guess my question is...does it sound like he is being treating for Ulcerative Colitis? The doctor didn't specify and we don't see him again until May. He didn't put him on antibiotics so I know it's not infectious colitis. He also said the visual of the digestive tract didn't show any indication of colitis, but the biopsy showed much more inflammation of the colon than expected. Just seeking opinions from people who have experience with colitis--especially since I can't find much about colitis and children. Thanks in advance!

I do not think we have enough info to say whether it is UC. You would need the pathology from the scope. It sounds like it is inflamed, whether it is acute or caused by a chronic condition (UC), cannot be ascertained at this time. I am just very thankful to read he's doing well on Apriso. I hope you find a cure. Colon inflammation = colitis, but that doesn't necessarily = ulcerative colitis. My dog has gotten many bouts of colitis and they are always managed with diet, antibiotics, rx...

Sad to read! Sounds like the baby is responding so thats great! I bet the have a cure in your babys lifetime! Soon even! Big hug!

They actually did test his stool when he was hospitalized. He was negative for all parasites, bacteria, and virus. He had positive lactoferrin, blood, and his CRP inflammatory from his blood test was almost 30. He really stumped the doctors when he was there--they were sure it would be shigella or norovirus. When everything came back negative, they said it had to be food related. OldMike--his GI specializes in eosinophilic disorders and said he found no evidence of them during the procedure or on the biopsy. I'm happy he's doing well on Apriso but worried if the doctor decides to take him off. He was to the point where most of his multiple diapers a day were straight mucus.

It does sound like he is being treated for UC, but without an actual diagnosis it is hard to know for sure. Have you considered taking your little one to a pediatric GI doctor? There are some wonderful ones who specialize only in the treatment of IBD. Where are you located? Maybe someone could point you in the right direction.

Just wishing you well with your little one. This has to be tough on parents...hope you can find some definite answers soon.
B