STAY STRONG!!!! school systems has to provide schooling at home! get a doctor note stating her condition and they will provide a teacher to teach him at home. That is what i have to do with my daughter age 11. somedays she can go to school and others are bad. Just remember there is NO CURE. no medicine will cure this condition. All the parents have to understand is how we can control the pain management between outbreaks. My daughter makes herself play games with her friends and does competive horseback riding. This all hurts her bad at night. But she refuses to give up being a kid. Her pain tolerance is real high. But we found out that taking naproxen in morning and night plus with WII fit working on streaching with at lease 8 hrs of sleep keeps help her thru everyday. Like i said this works for her, every child is different. Good luck!!! I do moniter this site everyday. I'm in the works of starting a web site for kids with CRMO to get in contact with each other and the doctors everyone has used and treatments. there is nothing now.