Question for the Moms/Dads

Hello All,

We are in the very early stages of testing for our 13 month old. She has been have blood and mucus in her stools. Her blood work "looks great" and she had a Meckles scan that came back normal. I am just wondering what everyone's experience has been. We are scheduling a colonoscopy, which is scary to imagine for such a tiny child, and hope it comes back normal. I myself know what living with IBD is like and hate the idea of my child dealing with all of that. Has anyone had their child seen at Boston Children's? Thanks All!
Original Post

Jess, wow - 13 months old is SO little. I think that's about the youngest our GI clinic at Children's Mercy in Kansas City said they have dealt with. Glad tests are coming back positive so far, and crazy to think of scoping such a little body. Hope it all goes well.

 

We live nowhere near Boston, but our almost-12 year old (she has told me she is not 11 1/2, but 11 5/6 LOL) was diagnosed at 6 1/2 years. The biggest blessing is knowing what we were (potentially) facing, and not being unaware of IBD altogether like so many parents. Scopes went fine - their practice utilizes one doctor for all scopes. I guess that's a good idea. Certainly well experienced. She avoided the hospital that year, but was in the hospital a year later and never really reached remission again. We tried prednisone, biologics (Remicade and Humira), and teetered on starting on Imuran. In the end we opted for surgery since the only med she responded to at all was prednisone, and not 100%. Prior to surgery she was getting up 6 times at night - which is no way for a kid to live. I consider her surgery very successful, and was shocked how well and quickly she healed up. She lives with chronic pouchitis that does cause some absorption issues, but you would never notice by watching her. Hope this helps. - Steve

Wow, and I thought my son was diagnosed young at the age of 6.  Poor baby.  I've heard Boston Children hospital is a good place.  You have a lot of options up these with all the hospitals.  Your daughter's symptoms sound a lot like my son's initial work up. But I knew in my gut it was UC.  Unfortunately, I was correct.  All I can say, is trust yourself.  Another place to go that I know is very good is Dartmouth Hitchcock in NH.  My sister in law has Crohns and uses someone up there, but I know her guy is not a peds doc.  it's a good hospital and med school.  I in NJ so I'm fortunate to have a medical school close to home. It make a big difference.  Please let us know how you make out with your baby, she is way to young to be going through all this.

 

 

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