WOW. You have been through a real roller coaster ride. My daughter has the salt wasting CAH detected at birth. We had what we call a bone age done. This is an xray of I believe the right hand. They determine the child's bone age through this xray. Sometimes the bone age can be excelled through having the child's CAH mismanaged. Some have shown a bone age of 11 when they are only 5. The problem is that the bones grows to a certain age then stop. That is why in most CAH patients you will find a shorter height if the CAH is not caught at an early stage. I am sure someone can explain it MUCH better than I can. (can anyone help me?) How tall is your daughter? Perhaps her bone growth excelled so fast that the body could not keep up thus causing the pain. My daughter complains once in a while of pain in her legs and feet. I know when she is growing. We don't sleep. Her bone age was perfect last year. Also long term use of cortisone can cause osteoporosis. Not that your daughter has that but perhaps her bone density is not what it should be. Did they rule out arthritis? I know she is young but isn't there an arthritis children can get? Maybe I am not right. Hang in there. I know there will be others to help you. Let us know how your daughter is doing. Good luck!