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Our son just turned 19 and has been dealing with RSD/CRPS for almost 5 years. His diagnosis only came a little over 2 years ago; the fact that you already have a diagnosis is in your daughter's favor. Look for a few things on the internet -
Dr. Sherry in Philadelphia; The Children's Institute in Pittsburgh; Dr. Rhodes in Corpus Christi, Texas. Not sure what the rules are for this particular board - usually I can't post websites or name books. Our son's pain does not have any apparent injury or trigger and it's bi-lateral in both knees. Physical therapy (2 1/2 hours daily) helps him maintain circulation and function in his legs but his pain is severe (7/8 on scale of 1-10) and is with him 24/7. Sleep is poor and even when he does sleep he has what he calls his "pain dreams" which means that he's conscious of his pain at some level even when sleeping. He's had daily nausea for the last three 1/2 years which I"m sure is wreaking havoc on his esophagus. Pain meds, acupuncture, biofeedback, gluten-free - none of it has reduced the pain even an iota. Crippled by the pain in October 2006, an in-patient stay of 5 1/2 weeks helped him regain function via intense PT and his pain dropped from a 10 to its current 7/8. Currently, a custom-built electrostimulation therapy has reduced his nausea by 50% and helped improve his ability to fall asleep and stay asleep for longer stretches dramatically. (That's the Rhodes connection coastal blend pain center in texas.) Always remember that your daughter is NOT a baby but probably stronger than most kids since she deals with a level of pain that most of us never experience. It's not in her mind and although stress might aggravate it, it's NOT the cause of her pain. I'll try to look for your posts down the road. Don't lose hope - there have been so many advancements just in the three years since our son was finally diagnosed!