My name is Mark. I have a son who is 11 and was diagnosed with UC when he was 9. My wife and I are trying to find as much information as possible on children with UC.
My Son’s Colitis Story:
My son is currently in the middle of a flare up. It has been ongoing for a month and a half now. He is on a round of prednisone and seems to be on the way back up. This is his third major flare and is by far the worst. His first flare up was three years ago, and was preliminary diagnosed with UC, about a year later he had another and was confirmed to have Ulcerative Colitis.
We originally went to the University of Iowa for treatment but have since switched to the Mayo Clinic in Rochester, MN. His flares seem to be in the fall. All three major flares have started in late July through early August.
Our biggest concern has been the drugs that the first doctor and now his current doctor want to place him on. Last year his first doctor wanted to place him on asighaprine (not sure on the spelling) which the first line in the warning section stated that this may increase you chance of leukemia. Now the current doctor wants to place him on Remicade (again not sure of the spelling).
My wife and I do not believe his symptoms match with this harsh of a treatment. Once again because of the possible side effects. I mean holy cow this is an 11 year old boy!! I would rather approve a partial removal then subject him to the possibility of long term side effects. If he was an adult and made his own decision than so be it. Remicade was only approved for children last year. We are not going to chance it.
Is there other people on here who have children with UC?
I would like to read or hear about their experience.
I have been looking into natural herbs and alternative treatments. I just started looking into the SCD diet. Any other suggestions would be welcome.
written by Mark
submitted in the Friends and Family of Colitis Patients section