Wow my heart goes out to you. My son Matthew is 13, he broke his ankle in 3 places last September, had surgery for hardware implant, and was diagnosed with CRPS just after Christmas. He has been doing physical therapy in a pool and is about to graduate to the physical therapy gym. That's great that she is still active, I'm new to this crazy world of CRPS but from what I understand, continuing to use it is critical to recovery and keeping it from progressing. Physical therapy is the standard "treatment" and anything else is really geared toward managing pain and making physical therapy tolerable. Have you tried finding a pediatric pain management doctor? They would be your best bet for a doctor familiar with CRPS and how to treat children/teens in particular. Our son is seeing one at Children's Hospital here in Michigan and he has him on a vitamin regime that eases the pain (vit. C in particular), although it takes 6-8 weeks for the vitamins to start having an effect. He is on Vitamin B12, Vitamin C (500 2x day), Vitamin D, Magnesium, and multivitamins. He hasn't been able to tolerate side effects of pain meds. You do want to avoid any opiates for pain b/c they can have the opposite effect with this condition. Also, avoid icing it, the cold damages the myelin sheath around the nerves and worsens the pain. (Been there, done that, he was moaning and near screaming in pain and we couldn't figure out why it got so bad. If I were prone to mom guilt, I could write a book.) He does find relief from a heating pad and it may help a little with the circulation issues that cause the color changes. His physical therapist had him start wearing a compression sock. I don't know if there's anything similar to promote circulation for the arm.
There's lots of good support for you here, you're not alone!!
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Originally Posted by Patmama
Hello friends. I am the Mom of a 16 year old girl just diagnosed with RSD, 3 weeks ago. I am beyond frustrated and so scared! I live in the Midwest, and so far I have mixed messages and nobody seems to know for sure what I should be doing. I have read many things (conflicting) I have called the research center in Florida, I am talking to a Neurologist that diagnosed her, but admits she knows little about the disease. My daughter injured her right hand 2 years ago playing softball, we went to 9 doctors over a 2 year period before getting to where we are now. The pain has moved from her right hand, to her elbow, to her shoulder, and now she complains of headaches, and eye pain only in her right eye, with some blurring. Her hand turns a bluish color occasionally and swells some. I just got off the phone with the Neurologists PA, the Dr. tells me that the eye pain and pain in her head are not associated with the RSD. How can this be?? It's only on the right side of her head..as all other pain is on the right side. I have read that early diagnosis and treatment is beneficial..what treatment? What should I be doing?? Please help me.. I feel so alone and scared. I want to help my child, but I don't know what to do, or who to turn to. She is currently only using a pain medication rub that seems to help the pain some. We are talking about putting her on an antidepressant for the nerve pain. What can I do to slow progression?
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