one-year old infant

I was wondering if there have been any case reports on the boards or elsewhere of a seven-month old baby having UC. My son who is now thirteen months has a colon and stomach that is completely covered in ulcers. We just left a meeting with our GI team who have brought in Auto-Immune, Immune deficiency, Hematologists, etc. because his case seems to befuddle them all.

They don't really have a strong clue as to a diagnosis or cause. My son has no stomach pain, he is happy, growing (though it has slowed) and seems normal other than the ulcers in his entire colon and stomach.

He is on Prevacid and Sulfasalazine and they were talking about corticosteroids today. He's also on a baby form of the scd diet, which means not eating much variety.

I started him on Probiotics and Fish oil last week and there is some improvement. He has had the entire range of diagnostic tests. Colonoscopy, endscopy, upper Gi, barrium. It's been so bad that he has had to be transfused twice already.

If anyone can provide an educated opinion regarding how long we should hold off on the steroids, if new drugs in the pipeline are worth trying to hold out for etc. They say to get it so young is rare and he's been breastfed his whole life. He was on antibiotics twice but has been tested for C. diff, but I asked them to test again today.

Any advise would be greatly appreciated. The harder drugs are so scary because he's so young and developing.

it is rare but babies can have UC. i am so sorry that your baby is having such a hard time, i will keep him in my thoughts.
my cousin had a problem similar, where he had constant reflux and uclers in his stomach, and what they finally found out, and i may not explain this correctly, but when babies are in the uterus their intestines are on the outside for most of the time and then towards the end, they go into the body, but what happened to him was, when they went in, a small part didn't close, and it was causing all kinds of trouble in him, it was allowing stuff in there that shouldn't be in, and letting stuff out that shouldn't have been. He was three i think before they figured it out. i'm not saying that is what your son has, but maybe you should have them start thinking outside the box.
i really really hope they find out something and he gets better

Thank you for your kind words of support. My wife and I are very frustrated with the difficulty of finding a diagnosis. We even talked to a hematologist today who was looking possibly for histiocytosis, a blood disease that looks even more difficult to deal with than UC. The doctor said that she didn't think he looked like he has histiocytosis because his external appearance is pretty robust. He doesn't look like a sick baby, except of course in his bloody diapers and the monthly, so far, need for a blood transfusion, which obviously qualifies him as a very sick baby. His GI doctor, at UCSF, expressed trepidation at continued transfusions as they expose him to a whole list of possible complications in themselves.

So the attempts to get my baby into remission continues, a race I must say against the need for corticosteroids. Though I did read a study yesterday suggesting that the earlier you can get a newly diagnosed patient into remission the better for the ultimate prognosis as far as the extremity of the immune response goes.

But of course I would like to find at least a pretty assured dx before subjecting him to such potentially damaging substances.

As for familial history. No Crohn's or UC but a grandfather with Vtiligo and a Grandmother with Graves disease.

Thanks again for the support.

I know its hard for you to see your little one suffering but hang in there, my daughter was turning 2 when it hit her. She was confined in the hospital twice, transfused twice, doctors have no idea (here in the philippines IBD is so rare) or experience with the disease. So my daughter change pedia GI and gave her streroids like a miracle all her symptoms were gone within 2 days,  but after tapering and off with pred for a month her symptoms came back. So she was put back again on pred, for 6 months everytime we taper to 5mg she woul\d relapse. Most of the time she's pretty much ok when she's on the 7.5 mg, side effects are the usual moon face, weight gain, leg pain no serious side effects all her blood work was fine. Right now she's off the pred and doing ok and I pray she's stays that way, Knock on wood. By the way my family relocated to concord ca. and her doctor now is Dr. melvin heyman at UCSF head of pediatric IBD. Did you meet him? My prayers are with your son i know the pain of being helpless.

I dont know if the combination of supplements and drugs or steroids alone put her in remission, my only experience that everytime she will relapse increasing the dose of the steroids will put her back into remission. She will not go into a full blown flare and will be controlled within a week and be back to normal, but pred is an evil drug so i want her off pred so were always challenging it by tapering it. This time we tapered slowly and increasing it a little when there is something unusual and tapering it again. Her diet is limited to rice, vegetables, lamb,chicken, and her milk peptamen jr (based on the fodmap diet). Hang in there and be strong for your son and keep the faith