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Old 06-15-2010, 09:46 AM   #1
laurenb0222 laurenb0222 is offline
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Join Date: Jun 2010
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Question Trying to find someone who has a child with CRMO.

Hello!
Im not sure if anyone still gets on this message board but im in desperate need of help. I have been trying to find someone who has a child with CRMO. My son turned 2 yrs. when he started having symptoms and was 3.5 yrs. when he was diagnosed with CRMO. He has it everywhere from the pelvic bone down to his toes. He is 5 yrs. now and still doesnt talk much about where he feels the pain so its hard to determine where it hurts the most. He has a very bad limp and is in a ton of pain. He keeps getting fevers as well. He was so young when he first developed the disease and he now has a limp and has a hard time walking. Hes been on naproxen and enbrel. I took him off the enbrel bc he kept getting sick at school. Im not sure if I should keep him home and keep him on the enbrel or let him go to school and take him off? UGH! So crazy bc the doctors dont help at all! I really want to go see Dr. Ferguson with hope that she can figure something out with my baby. His sed rate was down on the enbrel but now it is back in the 40's and he feels awful. Im wondering if anyone has thought of doing stem cell for their child with this disease? I would love to hear if anything has worked. Thank you!

Lauren

 
The following user gives a hug of support to laurenb0222:
Aaronsmom04 (10-24-2011)