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Newly diagnosed 2 year old

Hello Everyone!

I am the mother of newly diagnosed 2 year old little boy. He was had his first colonoscopy in April and we were told it was Ulcerative Colitis. At our follow up on May 14th we were then told the biopsies came back as Granulomas and it was Crohn's. There is no confirmed family history of IBD so this is new to all of us. The doctor started him on Sulfasalazine but now he as the beginning of an abcsess and we are trying Canasa. The more I learn about this disease the more it scares me. So that's my story :)
 

David

Co-Founder
Location
Naples, Florida
Hi there and welcome to the community :)

I'm so sorry to hear of your little one. :( My heart goes out to your entire family.

Does your son have inflammation in his small intestine as well as his large intestine? Or is it confined entirely to his colon?

How experienced is your doctor with Crohn's disease? I ask because his current meds are... not that good for many with Crohn's though I can understand the desire to be ultra conservative with a two year old. Though I would certainly suggest you read about enteral nutrition as that is conservative yet works EXTREMELY well for kids.

Where is the abscess located?

As my little penguin said, be sure to check out our Parents of Kids with IBD section. The parents there are amazing and know a ton.
 
Thanks for all the welcome wishes!

David, currently his inflammation is only in his colon. They did a barium X-ray with a small bowel follow thru and it was clear. He does have reflux, which they said he should have outgrown by now but I'm not sure it as anything to do with his Crohns.

We are extremely lucky that his doctors specialty is IBD and he does a lot of work with ccfa on research. We travel 3 hrs to see him at UNC. I will nutrition guide you suggest, I much prefer to be conservative while he is still to young to tell me about any side effects from meds.

His possible abscess is located right above his anus, under his testicles. We have been on Canasa for 3 nights now and this morning it actually looked a little smaller!

I would welcome anymore reading suggestions as this is so new to me and I crave information!
 
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