Re: My son has CRMO - He is in constant pain now.
Hello, I'm new to this web site, but very excited that I have found others with CRMO. My 12 year old son was diagnosed with CRMO a year and a half ago, it took doctors well over a year to figure this one out. My son at the age of ten started walking funny, like his hips were twisted. To make a very long story short he has been tested for everything you could think of and finally we are told our son has CRMO. But many of these messages I have read on this message board , my son has many more areas of his bones that are affected, hip, both legs both wrists and both ancles. I have learned something new on here I didn't know CRMO could affect the jaw???? Our doctors here in Indiana have seen very few cases of CRMO and all our questions are always answered with (we just don't know) what parent wants to hear that? We don't , and there is very little research being done on CRMO. My son too is on lots of medicine, he is on Methotrexate injections once a week, leucovorin, naproxen, and a few other meds that are given because of the side affects of other meds. To many meds for a 12 year old kid. We to have been told about starting enbrel as well. But we are looking for any new info on CRMO and we too have been told about Dr. Polly Ferguson in Iowa. if anyone reading this has anything they can tell us to help our son Please let us know...................... i do have a question for anyone who might know, How long does CRMO last, is it forever or can our son out grow this?