First off, I am so sad to hear about yet another teenager with RSD!!
I understand what your daughter is going through, I have had RSD since '05 (I was 15 then), and am nearly 17. I would love to talk with her! Many soft hugs to you and your daughter!
I wouldn't suggest going to a "Children's Hospital" program for RSD...
READ this article, PLEASE!!
http://www.rsds.org/4/youth/pdf/AMP_...entHandout.pdf
Dr Sherry (the head rheumatologist at Children's Hospital in Philadephia, PA) believes that the child "did this to herself, and that the reason she has RSD (he calls it RND- Reflex Neurovascular Dystrophy) is because she was a high achiever, has family relationship problems, couldn't deal with stress properly, could be an anxious child, or could be a highly responsible child, is depressed etc, etc... (so, he thinks that all of these "psychological problems" caused her disorder).
I wouldn't suggest his clinic... unless you believe that your daughter has a psychological problem and needs it beaten out of her head (he'll give lots of one-on-one counselling, family counselling and group counselling as well as aggressive PT).
Dr Sherry's site:
http://www.childhoodrnd.org/index.html
A. I. DuPont hospital for children isn't much better- they believe in the physical therapy, psycho therapy and medications (Dr Sherry at "Children's Hospital" does not allow any medication, and he believes in making you do PT through the pain for hours at a time (even if you scream and cry!), and he believes that you will get better by PT- which certainly hasn't proven true in mine and many other's cases). DuPont will not do nerve blocks or injections, and you will find that they also believe that in a way a child "did this to herself" (and it is caused by depression, personality traits- high achievers, highly responsible children-, anxiety or any family/ relationship problems), thus you need psycho therapy to fix your problems that caused THIS and you must get pain coping skills as well from a psychologist.
I am not ruling out helpfulness by a psychologist for pain coping techniques (I rule out a psychologist who wants to analyze me and find out why I "did this -RSD- to myself!) or PT. PT is a good thing, but it has to be done right and somewhat gently (aggressive therapy did not make me better- only with sensitivity to touch- and I deal with nearly full body RSD), not to the point that you are screaming and crying in pain and exhaustion. It is too much on you if you do that much PT when you've got RSD. It flares up your pain a TON, and it makes you even more exhausted.
I previously believed that aggressive therapy was the way to go, and that it would cure me. It didn't! And I went through a LOT of pain from doing it that way for months. It wasn't worth it. I now do a home exercise program which has helped me, since I can do an exercise, rest, do another, rest and so on! PT in moderation
is helpful. I am on different anti-seizure medications (they help with nerve pain), anti-depressants (they help with sleep, migraines and pain), muscle relaxants (for muscle spasms) and a pain medication.
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Medications will probably help at least somewhat (anti-depressants, anti-seizure medications and pain medications are all options for relieving some pain). Nerve blocks, trigger point injections, massage therapy, physical therapy and SCS are options as well.
If she deals with sensitivity to touch (allodynia) desensitization may be helpful. If you have questions on desensitization, I'd be gald to tell you more.