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genital lymphedema

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Thu, October 03, 2013 8:39 AM

I have a 17 year old grandson who was diagnosed in 2006 with crohn's disease.  In short, he has tried virtually every drug therapy approved for children with little success.  He also has developed most every complication -- mouth ulcers, joint pain, bone fractures, severe psoriasis, p. gangrenosum, uveitis, perianal disease, kidney stones, pancreatitis to name a few.  Two years ago he started a cimzia/methotrexate combo therapy.  Shortly thereafter he was admitted to the hospital with a severe rash and accompanying swelling of his scrotum.  After nearly two weeks in isolation he was diagnosed with a rare complication in children -- metastatic cutaneous crohn's.  The lymphedema now includes the entire genital area and is frequently accompanied by moderate to severe pain.  He recently underwent surgery to "install" a permanent drain in a fistula that was discovered between the scrotum and the colon in the hopes that infection and fluid would drain from the area and alleviate the problem.  It was been over two weeks and the edema has only increased.  The plan is to discontinue the cimzia and restart humira (along with the methotrexate).  We have been advised by the physicians (and there are many who have been consulted) that our best hope of finding a treatment plan will be through someone who has experienced this because it is so rare (especially in children) that there is virtually no information in the medical literature.  I hope someone out there has some information that will help us. 

FPO lboling
Joined Oct 3, 2013