Hi. My name is Amanda and I have a 6 year old daughter who was just diagnosed with Crohn's Disease this week. She's had stomach cramping and loose bowels for the past 5 months (it started with a week+ of diarrhea in June) and also swollen lymph nodes in her intestines. Since her dad has a severe case of Crohn's, her pediatrician was very quick to refer her to a GI and after a colonoscopy and endoscopy on Wednesday, here we are.
Her father and I are no longer together so I haven't had to deal with Crohn's in awhile. We knew it would be a possibility that she'd get it, prayed she wouldn't, and really thought we wouldn't have to deal with this until she was in her late teens at least. 6 is way too young to be having to deal with this!!!
The GI doctor says it affects the end portion of her small intestine and her entire colon (according to the granulomas seen in the biopsies). She wants her to get her first dose of Remicade next week
. Her dad responded well to it but needed it every 8 weeks to keep his under control. Unfortunately he's pretty bad at keeping up with his health so he's not a good role model for handling Crohn's.
My mind has been spinning with all of this information. I failed to ask why she wanted to start her with Remicade so early. Is it because of her dad's severe case? Is it because it's affecting her entire colon? She has stomach pains daily but there's no blood in her stools and she's not anemic but is low on the protein stuff (can't remember the word) according to her bloodwork.
I'm not completely clueless when it comes to the world of Crohn's but it's an entirely different ballgame when it comes to your little angel having it. Any advice you can pass along would be greatly appreciated (diet suggestions, medication suggestions, general experiences and advice).