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Veej,

Thank you for the information.

You asked how my daughter's Crohn's disease was diagnosed. First of all it took several years and 3 different major medical centers to get the diagnosis. We spent several years with doctors claiming it was TB on one extreme or emotional/behavioral problems on the other. The eventual diagnosis of Crohn's was made based on biopsies taken from upper and lower endoscope procedures.

My daughter's case is not typical Crohn's. While she has pain, her main symptom (pre-Remicade) was "wasting away". She was basically slowly
dying of starvation. Even with medicine (pre-remicade), she continued to waste away for another 2 years and weighed less at 9 years of age than she did at 6.

Her GI doctor treats her for Crohn's. He did say one time that he is not sure she even has it. However, Remicade allows her to grow. She has reached normal height and weight on Remicade. (She has to have Remicade every 5 or 6 weeks or she starts losing weight quickly.) Her GI doctor believes Remicade is very necessary, but he can't explain the new symptoms. He referred us to a pediatric Rhuematologist because of the new symptoms. The Rhuematologist absolutely says there isn't any arthritis or lupus. The Rhuematologist put it back to the Crohn's doctor and said to double or triple the Remicade.

No one is willing to discuss the idea of Remicade induced Lupus. I called Centocorp myself, and they just say it is extremely rare. The GI doctor says if we go off Remicade, we will not be able to start it back up, because stopping and starting always leads to allergic reactions.

She is due for Remicade again in a week, and I don't know what to do.
Thank you for listening as I vent.





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