NeuroTalk Support Groups

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)

- - Desperate Mom (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/180120-desperate-mom.html)

Here we go again

Thank you all for the kind words and suggestions. Today we are having our first Physical Therapy appt in over 1 1/2 years.

The therapist just told me that she can't call this CRPS as it is too far out from the initial injury. I asked how that is possible since he was never completely in remission and never got off his meds. I am frustrated beyond words. Thankfully, I never go anywhere without a second person to attest to his issues so I don't get labeled the "crazy nurse mom".

I am definitely looking into other options. I am tired of having to prove things to these people and feel like I'm the crazy one. I am the one taking care of this child 24/7.

Anyway, I am thankful for the support of you all. God bless every one of you!
Kristen

Quote:

Originally Posted by alaska49 (Post 935668)

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

Quote:

Originally Posted by kkiese (Post 934079)

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

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. :hug: