Originally Posted by momofrsd

My 14 yo daughter was diagnosed 2 years ago with RSD in both of her legs hips to toes, the MD’s feel she she got it from a virus. Since the beginning she has been hospitalized 11 times, had 6 Ketamine infusions, 2 sciatic nerve blocks, 2 epidurals, Lidocaine drip, IVIG, botox injections, high dose IV steroids and has taken all medication indicated for this disease. We live in Sacramento, CA and although it is a big city, there is NO ONE that knows how to treat her. We finally got hooked up with Stanford Pain Clinic, and Dr. Eliott Krane about a year ago and the team at Stanford has helped us move in the right. The treatment that worked for my daughter was intensive therapy, OT/PT/Psychotherapy. She is still struggling, but she is off all narcotics, is going to school part time and functioning at about 50%, which is better than before at 0%. This disease sucks! It scares me that when she is older and has this much pain she will resort to doing things that are not good, and could harm herself. Does anyone have any similar experiences that can share how you are coping and how your child or loved one is doing? Thank you