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Newly Diagnosed 6 yr old with Crohns of the stomach/duodenum/cecum


Tue, June 16, 2015 8:08 PM

Hi -
This is all very overwhelming to deal with in my 6yr old son.  After 3 months of daily vomiting and abdominal pain, we got in with a pediatric GI dr.  After EGD, stool tests, and colonoscopy, it was confirmed Cronh's Disease of the stomach (which I guess is very rare?), duodenum, and cecum.  He started high dose steroids 2 weeks ago along with Pentasa.  Previous to the diagnosis he was on Prilosec and Carafate, which we are continuing.   The vomiting has stopped, and now that we are on the 2nd week of steroids, the stomach pain has stopped!  We just had our follow-up with the GI dr.  He said that once we are done with the steroids (2 more weeks high dose, and a month of tapering down), that he may flare again since he has Crohn's of the stomach.  The Pentasa is helping his colon, but he can't be on steroids forever.  If that happens, the dr is talking about Imuran or Remicaid.  Both scare me, but I don't like the thought of the lymphomas and cancers in young males with the Remicaid.  Is there anyone else out there with a young boy with stomach Crohns that can give us any insight??  Thank you so much!! 

FPO nelsonshan
Joined Jun 16, 2015

Thu, July 23, 2015 6:54 PM

 Reply posted for nelsonshan.

My son was diagnosed at seven. Very severe as well. Throughout his entire intestines. He is now 13 on remicade and doing awesome. I also have the disease. He has had very minor side effects and I have seen the top 3 doctors in NY, NJ in Baltimore. All agreed on him continuing the Remi. Very difficult decisions. Good luck with your son.

FPO raralegs
Joined Jul 23, 2015

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