Originally Posted by kkiese
Dear Forum friends,
I have been battling this disease for my son nearly 2 years. He is 12 now.. He was actually doing well until we tried to wean off his Neurontin over the summer. By Sept he was in full blown relapse with spreading from his original injury site of his foot (it was in both feet/legs within 3 months after the injury) to full body. He now has horrible spasms in his neck, spine, face, and arms. He is on Visteril for spasms, Neurontin, Prednisone, Sleep aids, etc. The only thing they offer is Valium for the spasms for times when they just won't stop. We have been to the ER twice since Sept for the spasms, with no real relief. Baclofen gave him a horrible headache. I am now searching for a second opinion. He had intensive physical therapy during the initial injury and will be starting PT again soon. I need suggestions for the spasms, for a doctor that sees Peds patients near MN. We have a doctor here at Mayo, but I have not had a lot of luck. I feel like I am the only advocate for my son and no one can help him. Any suggestions are welcomed.
Hi! My name's Sara &I'm fifteen. I developed CRPS when I was ten, I've had it for five years. Now, I don't have it as bad as your child, but I do have it in my legs as well. Mine was a soccer injury. Anywhooo, mine is spreading, and I do have spasms sometimes too, in my neck, shoulders, &back. And as far as physical therapy, I've been through that for these five years, &I'm still going through it. It's best to find a therapist that won't push your son too, too far. He's got to have a therapist that knows when he's had enough, when he needs a break. Those are hard to find, but you should try. Intensive therapy can make it worse. I know this because when I first had my injury, they couldn't find my fractures and treated me for a bad sprain even though I was in a load of pain. It's tough when you're getting pushed and sometimes it can make it worse, that's what happened to me. If he ever wants someone to talk to, you can private message me and I can send you my e-mail so he has someone to talk to. I hope he gets relief soon! Love &hugs.