QuestionMy 14 yr old daughter was diagnosed with Complex Regional Pain Syndrome last year in her ankle. She still has pain, a year later but is MUCH better. Pain in leg/ankle is about a 4 of 10 every day. She copes. Most recently she tore her rotator cuff when throwing a frisbee. Since then her shoulder dislocates ALL the time. She can "pop" it back in, but this is very painful for her. She did 5 weeks of PT and she has seen four surgeons that say she is too loose for surgery to be effective. The dr's have all mentioned hypermobility and told us it is something she will just have to live with. I have read about the Beighton hypermobility scale. I believe she rates an 8. Over the year she has had other medical issues and I think they may all be related. My concern today is that she is in pain all the time. Now not only her CRPS ankle, but her shoulder. She has no doctor helping her with this. They have all said there is nothing I can do for you. Can you tell me what kind of doctor we should be looking for? These are some of her symptoms:
CRPS in ankle, MDI in shoulder, patellar instability, hip pain, rib pain, rib feels like it moves, headaches, vision "disturbances", lack of concentration, clumsiness. She has had two concussions this year and one rib fracture.
She was treated for her CRPS in another state and so we have never really had a doctor oversee her care here near home.
I appreciate any advice. It is so hard to see our daughter deal with this pain and have so many doctors minimalize it.
AnswerI would look for a pediatric orthopedist... there are not a lot around in smaller cities. Your best bet would be to talk to her regular doctor about a referral to a teaching institution to get to one of the professors in the orthopedic program that specializes in kids.
