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.
Kristen

After these full body spasm episodes, he loses all feeling. We just carried him upstairs, dead weight. Anyone else lose feeling for approx 30 min after a bad episode? I'm afraid he'll need a wheelchair or that I will need Home Health Care for him if this keeps up. I am on Family Leave again because he can't be alone. Help.

I am sorry your son goes through this. I too go through such bad spasms my full body after about an hour non stop I just go limp and cant move and if the spasms are so intense I loose consciousness for somtimes up to 3 hours.

I take valium at high doses as well as ativan, baclofen and a few anti-eleptic meds and nassal ketmine helps also. There are time when nothing helps and I do end up in the hospital to get IV sedation to stop it.

Niki

Niki,
Thank you so much for sharing. That is exactly what happened yesterday. He seemed to go to sleep instantly just like after a person with a seizure.
Kristen

Welcome Kristen but sorry for the reason you find yourself here. I have crps and my doctor prescribed tizanidine for the cramping. I can take -2 per night. It knocks me out within half and hour. I usually only take one but occasionally I have been awakened at night with cramping. Wish I knew what nights would be bad for me because I'd take 2.I don't know if tizanidine is approved for children. I can't offer any suggestions on Pediatric hospitals.

Be warned Aggressive PT can cause spreads, should be lots of it but gentle, massage is essential, No ice No hot and cold water contrast therapy

PT in a RSD peds paitent is very diffrent then for adults. Its better for peds to start a more "agressive" PT program right away, usally impaitent for a few weeks to get the RSD in remission.

But i am sure you know that aswell.

Thank you both. When he was doing PT last time, they started with cotton balls, did some mirror therapy, a TENS unit, but that made the spasms much worse. Eventually, he went from wheelchair to walking and he was riding his bike and scooter last summer. His left foot definitely lost range of motion, but he was able to deal.

As I said, I will take any help. I have looked into this med and I have mixed messages about whether it is safe for children, but I plan to mention it to his doctor. Thank you!

I am sorry hes been in so much pain! I am on valium for spasms aswell. However he needs a more consistant dose of it. I also take soma. there the only 2 meds that will help with the spasms. I hope he can get relief soon!