Hi. I have just been reading about parents who have RSD and are raising teenagers. Well, I am a mom with a teenage daughter who has RSD, the result of a sprained ankle when she was 13 and in a school cross-country run. She is now 19, and has missed all her teenagehood - dating, social life, volunteer activities, etc etc. Of the four years of high school (grades 9 through 12), I would say she missed about a year of school. Luckily, she is very bright, and with the reluctant cooperation of her teachers, I took work and assignments back and forth every day, from home to school, so she stayed on the Honour Roll and won scholarships to university. University is proving to be a major challenge, and we have found that the stress of dealing with constant pain and a full course load is too much, so she ended up dropping some classes. This fall she will only take 2 instead of the normal 5 courses, and so it will take her a lot longer to get her degree.
Aside from the horrible pain, the inability to walk unaided, the distress of being in so much pain all the time, the loss of a social life, she is now having to cope with a new problem, that is thin skin that is literally springing leaks, and the wounds are not healing. The tiniest thing, and blood is running down her foot. I am using Jelonet, the impregnated gauze dressings used for burn victims and skin grafts. These are painful to put on, as anything touching her skin is painful. She is also on a variety of powerful pain killers which often leave her groggy, and that makes school work impossible to do.
It took 18 months for a diagnosis, during which time she was sent from one doctor to another, all of whom did the wrong thing. Her leg was in a cast for 6 weeks, and we know that immobilizing RSD is the wrong thing to do. She was told it was all in her head, and sent to a psychologist who gave her a "go to your happy place" tape to listen to.
I am wondering if anyone has any ideas about new effective drugs and also about photon therapy?
Thanks.
Judysh