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Change in meds?


Tue, August 16, 2016 11:45 AM

My 5 year old was diagnosed right before her 4th birthday with "indeterminate colitis". Her ped gastro said he is almost certain its UC (pancolitis). She was put on 3 pills of Pentasa daily and 2 VSL#3. Never taken steroids since the Pentasa did the trick quickly after her scope and doing well the last 18 mos. Her doc even talked about rescoping her in the next 2-3 years to see if she still had any sign of UC becuase she was doing so great. Her labs were perfect for the last 18 months. A few weeks ago, she had a small streak of blood in her stool and that has continued off and on for almost the last month. No pain, no diarrhea, no fever. Nothing but a small bit of blood on her last piece of stool that comes out and then a  bit on the TP. We, along with the doc was sure it was a fissure becasue she had no other symptoms. Then, we had her labs done at her appt two weeks ago and her CRP was 15. The doctor wasnt convinced it was a flare because of her lack of symptoms. He said it could have been a little virus or something, but he wanted to increase the Pentasa to 4 per day becasue she has had a weight increase of almost 25% since her diagnosis so it would make sense to go up on her dose. He told us to repeat the labs in 1-2 weeks which is now. We did labs this morning but will probably not know anything until tomorrow. She has remained the same with little to no blood the last 3 days. This is his thought. IF her CRP is still high and hasnt come down at all, he will rescope her to see where the inflammation is. If it is low, she can do suppositories. If its higher up, he is talking about putting her on Imuran.  I am a little scared of side effects. I know the benefits outweigh those, but its still a little scary. I am worried about the risk of lymphoma and skin cancer, obviously. I am also worried about the increased risk of infection. I What extra precautions need to be made to those of you with kids on Imuran when traveling?! Thanks!

FPO pcsg560
Joined Mar 6, 2015

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