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Crohn's Disease
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Posted 5/14/2009 7:16 PM (GMT 0)
So my 14 yr old daughter was diagnosed with gastroduodenal Crohn's this past Feb. She was on pred. and Pentasa and seemed to be doing much better. Last Sat. we did a scope one week after her final prednisone dose and she was inflamed and has a pyloric stricture. They couldn't get into her duodenum this time. My pediatric GI has never had a case like this so he called in another GI there who is doing the dilation. That was done yesterday to 6mm. She will go back next week for more. They did another biopsy to see if she has Crohn's in her stomach. They now have put her on Flagyl with her Pentasa. Her CT scan did see some improvement from the one in Feb. as far as the rest of her intestines. I am having a difficult time feeling confident in what the GIs are doing because of this rare type of Crohn's. How do you go about getting referred to a GI who specializes in this? Trying to find information on this type is so frustrating.
Posted 5/14/2009 7:40 PM (GMT 0)
Only thing I can think of is to go the Crohns and Colitis Foundation site and look for doctor referrals. I think the site is ccfa.org. Good luck!
Posted 5/14/2009 8:35 PM (GMT 0)
What would be the purpose of Flagyl in this case? I don't quite understand why it is being prescribed. (Of course that will be a question I ask next week)
Posted 5/15/2009 5:02 AM (GMT 0)
I know it isn't much help but I had a pediatric GI when I was first diagnosed and was not at all impressed with anytihng he had done (and he was with a well reputed hospital) I don't know if anythings different with younger patients than teens but I would suggest trying out a new GI.. Checking out the ccfa.org is a great idea but if you dont live in a big city they dont really have much for you to choose from (my experience anyway)... And of course if you aren't in agreement or confident with what the doc's doing you need to find a second opinion or someone you can trust.
Posted 5/15/2009 6:00 AM (GMT 0)
I found this link, I hope it will help with some of your questions...

http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1201000

:)

Posted 5/15/2009 2:11 PM (GMT 0)
Thanks pb4. I have read that article, which is why I was curious as to why she was placed on Pentasa and now Flagyl. I am about two hours away from two very good medical hospitals. Yesterday I emailed the ped. GI at one of them. She emailed me back and said her partner has an outreach clinic in my area. Now I just have to make the decision to switch and determine how to go about it. I don't know how it works with insurance and getting a referral.
Posted 5/15/2009 4:19 PM (GMT 0)
The GI just called me and said he consulted with several other GIs and they have concluded she should start Remicade. When she was first tested, her ASCA numbers were the highest he has ever seen. So what does that exactly mean?
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