6 yo son recently diagnosed with UC

Are there any other pediatric cases of UC on this forum? My 6 yo son was just diagnosed with UC w/ the most recent flare-up starting in early January. It's been a stressful past 2.5 years for us - 3 colonoscopies and varying diagnoses of allergic colitis, crohn's and now UC.

We're fairly confident it's UC as my sister also has it as well. Early on, we thought it was allergic, but he eventually had a flare-up w/out any diet changes, so that was omitted as a possibility (he's never tested positive for any food allergies either).

My son is currently on 1600 mg Asacol/day (compounded), Flagyl (compounded) and we were tapering his prednisone, but we noticed blood again this morning after 4+ weeks of normal stools. So, just waiting for the dr to tell us what to do. In the past, he always responded quickly to sulfasalazine (with a round of Flagyl) and then was fine. This time, he started on sulfasalazine and after a month of no improvement and a rash on his trunk, he switched to asacol & flagyl, canasa in PM, and added cortifoam in AM a little later. We tried that for ~6+ weeks and then started on the prednisone (he had lost weight so we needed to step it up). In 3 days, the bleeding was gone & his stools were completely normal in 1 week.

He hasn't missed much school w/ the flare-ups and his teachers are very accommodating. He has gained 6 lbs in 6 weeks w/ the prednisone & has moon face, bloating & and increased amount of fuzzy blond hair on his neck/back. He's such a trooper and doesn't let this get him down. It's so tough to see him go through all of this and I hope that he can get into remission soon.

Thanks for letting me vent...it's nice to find a place where everyone understands what you're talking about.

Hi Edadamo-

Thier are several parents on this board with children with UC. I find that most of them don't post here very often as their are some Facebook private groups that many of the parents use.

I am sorry that you find yourslef here- it is not a fun place to be.

I hope you like your son's Pediatric GI and you feel like you are getting good care.

 If you are on FB and want to leave me your name I can try to friend you and add you to the group.

Best of luck getting your son into a nice long remission.

Oh, my daughter is now 12 and we have been at this for 3 years-

her UC is still evolving and we are looking into next steps and meds at the moment as she is not in perfect remission as this time

My son was also diagnosed with UC. I recommend the two Facebook groups for parents with children who have IBD. I also check into this forum quite frequently.

My experience with this disease is that it takes some time along with trial and error to find the right medications to keep a person in remission. It has been hard on me watching him go through two sigmoidoscopies, a colonoscopy and an endoscope and an upper GI, all procedures I have never had to go through.

Thankfully, my son's quality of life is still very good and the disease hasn't kept him from doing anything that he did prior to UC.

OK Erin I sent it
hopefully it will work
sometimes it takes a few days

i don't know if it will help your sons, but it has helped me. Sodium butyrate enemas (just use an half full rowasa/sulfite-free rowasa bottle, pop the top off and pop open the pills into the bottle, CAUTION smells really bad) and raw garlic if they have had no issues with them before. also probiotics maybe something like ultimate flora critical care

also a ginger honey cilantro parsley shake makes me happy, may it make you & your sons happy as well

Post Edited (fightUC) : 5/9/2013 7:25:44 PM (GMT-6)