Our 11 year old son was diagnosed with Ulcerative Colitis. As parents we have learned one of the hardest things is not being able to “fix” the problem your child is having. Also making decisions for your child when you don’t know if it could possibly harm them.
Son is symptom free at moment.
Our son who is 11 was just diagnosed with UC. He had never been sick growing up and so this hit hard. He is seen at Childrens Hospital Columbus, OH. They scoped him, told us it was from top to bottom in large intestines. Sent him home on 40mg of steroids. Well he continued to lose weight and still had bloody stools. Took him back was admitted with IV steroids, not working after 6 days we were forced to make a dreaded decision of Remicade.
They did the remicade on day 10 and it did work. We are just so scared of side effects as this is a decision we are making for our son not ourselves. He has had his 2 wk dose and is weaning from steroids now. We are so scared of remicade but yet was told the only other option is surgery. Our son is not wanting the surgery at this point. Childrens told us they have 500 cases of UC in kids with an 84% remission rate. 100 of these kids are on remicade. We just know there has not been enough long term studies with Remicade and kids? Any suggestions?? Or anyone going through same?
Before this our son had one other time of loose bloody stool for 2 weeks but was not caught by the pediatricians that it might be UC. They were running tests for parasites, c-diff etc. It wasn’t until a month after when he had a fever I took him in and had the doctor we really like that when asked if she thought his immune system was down due to the month earlier him having bloody stool did we get referred to GI. They told us if he every had it again to call so they could scope. 7 months later it came back.
Where we’d like to be in 1 year:
With a cure!
I have to say Remicade did work but we are so scared of the side-effects.
written by “Worried Parent”