15th February 2005
The drug Azithromycin is being tested right now at the National Institutes of Health for teenagers with CRMO and seeing huge improvements.
I have done a clinical trial with NIH for a benign bone tumor study and found the best of both doctors and information with them.
Check them out as well as NORD (National Organization of Rare Diseases).
My son has JRA (8 years old), but if you are talking about the infusions - I would definately hold off. I have done the bisphosphonate infusions and they were horrible.
Post on what treatments you are looking for and see if someone can provide experience for you.
Let me know if I can help.
hrtofluv
I have done a clinical trial with NIH for a benign bone tumor study and found the best of both doctors and information with them.
Check them out as well as NORD (National Organization of Rare Diseases).
My son has JRA (8 years old), but if you are talking about the infusions - I would definately hold off. I have done the bisphosphonate infusions and they were horrible.
Post on what treatments you are looking for and see if someone can provide experience for you.
Let me know if I can help.
hrtofluv