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pentasa for my little girl

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Crohn's Disease
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Posted 3/31/2009 5:20 PM (GMT 0)
My daughter(7) has been on pentasa for a few weeks for "possible" crohns. She has severe polyps and lymphoid hyperplasia. Problem is she has developed hives and the doc has taken her off of it. She can not take steroids and possible allergy to Pentasa. The doc isn't giving her anything else and I can't get an answer whether she CAN take anything else. The doc was very concerned about trying to shrink the polyps. Besides steroids and Pentasa what are you all taking for Crohns? Also, do any of you have problems with polyps in the intestine? She shows no abcesses which I thought was a huge part of crohns.

THANKS!
Posted 3/31/2009 7:05 PM (GMT 0)
I have taken Entocort, which is a steriod but is not absorbed much by the body. I have also used enteral nutrition, which involves going on a strict liquid diet using something like Ensure. I also take probiotics and a few other supplements.

Aside from steriods and Pentasa there are also immunosuppressants like 6-MP, Imuran, and methotrexate, and the biologics--Remicade, Humira, Cimzia, Tysabri. Many people take supplements and dietary changes might help.

What are your daughter's symptoms? I have not heard of polyps or lymphoid hyperplasia as part of Crohn's, but I'm not an expert, certainly not on pediatric disease. You say it is only "possible" Crohn's, then I would not think it wise to move on to stronger drugs till you are 100% sure. Maybe you could see another doctor for a second opinion if you have not already.

I would recommend that you check out the DragonPack IBD forum, which is dedicated to providing support and info for parents of kids with IBD.
Posted 3/31/2009 10:11 PM (GMT 0)
Thank you so much for your post. Unfortunately she can't take the entorcort even though it doesn't affect the body the same as other steroids. She was diagnosed with Lyme disease a couple years ago which means absolutely NO steriods. We go see the lyme doc in a couple of weeks and are in high hopes that the issues with her stomach is d/t lyme and can be treated with antibiotics for . She has had nausea/vomiting for a few years now. She has never been well. Had reaction to her immunizations at 4 months old and stopped growing for a year. She has joint pain, fevers, severe fatigue and problems with thought processes. Definitely considering another opinion just like you mentioned. Her current GI doctor doesn't seem to have the time to help her. Thanks again for your info and I'll check out the dragonpack forum also!

THANKS!
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