I wanted to post this, since this was one of the first forums I found online when I started googling when my daughter was diagnosed with CRPS/RSD well over a year ago, after suffering for 6 months even before that. And everyone in here was so kind and supportive to me. She was 9 when she was diagnosed, and she's just about to turn 11 now.

By February of this year, her CRPS in her foot, had become so bad that she was in a wheel chair, and could not tolerate even a sock. We had to go out, and it was -20 degrees F, and she still couldn't put on a sock. She couldn't use crutches, because the vibrations from them hurt too much. We were on the waitlist for the PPRC at Boston Children's Hospital.

She began that program at the PPRC in February, and was there for 7 weeks. It was grueling. She was in PT, OT and Psych for 8 hours a day, and then 3 more with her dad and I in the evening. But, the program worked for her. They got her out of the wheelchair, back on crutches, then one crutch, then no crutches. They got her back in socks, starting with literally 10 seconds of wear at a time, and slowly building her tolerance.

She walked out of the program on both feet. She still reported pain levels of 8-9 constantly, but she was moving again. She was walking with a limp, and her muscles had deteriorated so much in her right leg that she wasn't able to run or support her self with just that leg yet.

After we got home, she continued with out-patient PT, and worked so hard. Each new accomplishment was amazing to us. Pushing on her scooter, riding her bike again, and finally running.

This fall she joined her school's cross country team, and now she's doing rock climbing, and she just got back on her snowboard. We don't ask her about her pain levels, as that's part of what you learn at the PPRC, but at her last followup, she's reporting levels closer to a 5, and her sensitivity to touch seems to be gone. She's on no medication, and she's sleeping well. I can only hope that next time she follows up, she'll be reporting complete remission.

I don't know what the future holds for her, but this is the post I would have wanted to read when I started searching. There are some great programs out there, and there are some wonderful Drs and therapists, and the one's at the PPRC changed the course of my daughter's life.