Originally Posted by SandyRI (Post 623697)

I have read that both the Children's Hospital of Philadelphia ("CHOP") and the Boston Children's Hospital - which is located in Waltham, Ma - both have excellent pediatric PT programs geared towards kids your daughters age. See the RSDSA website (RSDSA.org) and search under the "Kids" or "Teenagers" link. There was a good article about the success of the Waltham, Ma PT program within the last 6-8 months in the RSDSA Review magazine.

If you can't find it write me back and I'll find it for you. I truly wish you the best of luck. I have often said that I am profoundly happy that it is me that is sick, not my husband or my kids, I don't think I would be able to stand it if it were them.....please don't forget to take care of yourself, too...XOXOX Sandy

Originally Posted by AintSoBad (Post 623690)

Another idea, if it hasn't been mentioned, is you could call your insurance company, and ask them for a recommendation.
It seems odd that you can't find a children's Neurologist...

I really wish you and your daughter the best!

pete

Originally Posted by momw/rsdchild (Post 623404)

Well...6 weeks now my 15year old daughter has been in a bad RSD flare up. Now school, church or anything. She is just plain miserable. We moved last fall from Texas to Oklahoma and have made 3 trips since Christmas back to Dallas (5 hours) to see her doctor. He is great but has exhausted all he knows to do for her. She just isn't improving. He sent the paperwork to get her into a clinic in Tulsa because he felt like the long car ride did not help her after receiving ketamine treatments. We found out yesterday that they have denied her because she is a child. We can't find anyone in the state of Oklahoma to treat her. No one treats children. Now I am an intelligent person and I figure there have to be people under the age of 18 in oklahoma with RSD who need treatment. Do they all go out of state? This is just crazy! We don't know what to do! The children's hospitals don't have pain management programs and the neuros won't see her....anyone with ideas???

Originally Posted by momw/rsdchild (Post 624101)

Well, things haven't change much. She is stiff in a bad bad flare up. It was her doc from Dallas children's medical center pain management clinic who called this local doc and they denied her anyway! Her Dallas doc doesn't know anyone else here in OK so it will be a stab in the dark for any of us if we can find anyone who sees children. I have been called hospitals and clinic telling them our story and I get the same thing "we don't treat children". I finally called OU medical center children's hospital. The do not have a pain management clinic on their site but it turns out they are in the process of starting one. They said they would see her pending her paperwork from her previous doctor. That is awesome! I hope it sticks!! So, we'll see. The problem is she is in so much pain and they can't see her until mid march! We may have to take her back down to Dallas anyway just to get her some immediate help. Poor baby!