My daughter is 13 and was diagnosed 9 months ago. It sounds like the same thing that has helped your daughter has helped mine - lot's of exercise and psychotherapy, mostly aimed at taking her focus away from the pain. Her breakthrough came from an intensive program at Mayo Clinic in MN. She is in the school full day (something that Mayo absolutely insists on), but very much wishes she could just go half day. In terms of coping, I find I do better when I am able to balance the amount of time I focus on her issues (i.e. researching, spending time on this forum, taking her to appts, etc) and doing other things (working, having fun, cleaning the house). It's not good for either of us when I get sucked into her illness, but sometimes I do. I know that's probably not much help, but I at leasted wanted to let you know you're not alone.
Lori
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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 
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