Here we are in 2010 and our son still is struggling with CRMO..He was diagnosed year and half ago. Thus far he has been in a chronic flair with very few days that he feels good. Was started on Embrel and at first it was a "miracle drug" he was back running and playing and going to school. But after about 2 months the limp was back and spinal pain was increasing...We too have struggled with keeping him in school(school does not know what to do with him since he misses so much school). You can educate the school but this is such a rare disease process that it is hard to make them understand something that we hardly understand!! Currently he has had 4 really bad months!! he has lost 15 lbs(90lbs), loosing his hair, increased pain, increased sleep now it appears that he may have vasculitis in all his internal organs! We have gone to Children's Mercy to have him tested has he has had several issues with kidney's(trying to rule out acute renal failure)at this point CRMO has ruled his life and he is missing out on being a kid
We are really at a stand still to find a "cure" for the intense pain. Our sons Dr has been in touch with Dr Polly Fergerson(leading researcher for CRMO) to see if there are any treatments that we have not tried...at this point it is test..test..test! hopefully one day our son can be just a kid without intense pain, limping, multiple organ involvement. I wonder if we treating these kids like kids with bone cancer and had the pain medications available would it not be in their best interest to give them the dosage that would help them live a more "normal" life??...at this time we just hope for a breakthrough in reasearch on this rare disease.