Thanks for the kind words everyone. He just had a stool culture which found nothing. We're always looking for c diff with the amount that he's in the hospital. We have been tested for all allergies and even had him on an all elecare elemental diet for a few months when his condition first got real bad when he was 10 months old. The doctors hadn't seen this in someone so young so were slow to define it as Chron's or UC.
He didn't walk until he was 19 months.
We are trying to keep him out of the hospital again because we just got out and were hoping the Imuran would work. Our doctors felt pretty sure it would. But it hasn't. My doctors are trying to wait to see if the Imuran will work better because he just got over a cold and they said that getting sick sometimes causes short term flares for kids on Imuran. But the onset of symptoms this time was the same as with every steroid taper.
Along with the bloody stools he begins getting bloody noses, wheezing, coughing etc. All comes back together. On steroids none of it, some moon face and he doesn't grow. Which for a two year old is a problem. But everything else seems fine and normal, but of course he can't stay on the roids.
Thanks for your suggestions Rider fan. We have not discussed with our docs wether or not they give remicade to a 2 year old. We have an appointment this coming Thursday. But I would assume that if they do, it would be a next step. I hadn't heard of the low-dose nalrexone.
Anyway, we put him back on the steroids tonight because his condition was getting worse. Thanks again and if anything eventful happens I'll let people know.
Here's his blog
. He doesn't look sick, but if you ever saw one of his colonoscopy's or his inflammatory numbers or diapers you'd know that he is a very sick little boy. I'm sure everyone on these boards understands what i'm talking about