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newly diagnosed with Crohn's and also granuloma in the lung


Sun, April 22, 2012 7:17 PM

My 7 yr old daughter was finally diagnosed with Crohn's 3 weeks ago after being ill for almost a year.  She had fever, anemia, constipation, and weight loss.  Right before she was hospitalized she got down to a scary 36 lbs.  The diagnosis came as a surprise since she had a egd &colonoscopy in Oct. that was clear.  She was in the hospital for 3 weeks and was on tpn & lipids before they put the ng feeding tube which was there till we went home.  They did a ct and besides finding the inflammation in her gi tract (which led to new colonoscopy & diagnosis)  they found she had a nodule on her lung.  They did a procedure to remove the nodule and found it was something that is very rare but can happen with some Crohn's patients. They said it was a granuloma.  Has anyone else's children had this???  Right now she's only taking Prednisone and Sulfazine while the doctors decide how to proceed with treatment.  This is all so scary and my heart breaks when I think about how her future will be with this illness. 

FPO momto3gals
Joined Apr 22, 2012

Fri, June 01, 2012 1:11 PM

 Reply posted for Manzos.

This is my first post! We have some similarities in our situation. My son is eight and was diagnosed with Crohn's in February, when he spent a week in the hospital. He had small granulomas in his stomach and inflammation throughout his colon, or pancolitis, along with the weight loss, malabsoption, etc. After trying mesalamine and Entocort, we decided on Remicade at the strong recommendation of his Ped GI. This was a very tough decision. He has gained 6 pounds in the last 6 weeks, and looks and acts like a new kid. I know he still has healing to do. He still has GI symptoms (discomfort, diarrhea) and we watch his diet. We hope his lab results will continue to improve. No plans for the future, we take it day by day. He is also taking Pentasa.

FPO rachel1
Joined Jun 1, 2012

Mon, May 07, 2012 10:39 AM

 Reply posted for momto3gals.

Hello.  I am a mom of a crohns patient and reading stories like yours definitely wrenches at my heart.....I would love to help your daughter....our daughter was diagnosed with crohns last Sept....since then she has been on two natural supplements and only mesalamine....it is a really amazing story.......please see her story on Personal Stories...

FPO manzos
Joined Oct 9, 2011

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