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.

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.

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!

I know how difficult it is to be the mother of a child with CRPS. My daughter got it after a car ran over her foot 4 years ago. She is older than your boy, so it must weigh all the heavier on you as he relies on you so much. I am so sad that he has to deal with this condition, however please do not lose hope as younger patients have more brain plasticity and so there is better hope for remission.

You mentioned the Mayo Clinic. Does he have a good Pediatric Pain Management specialist there who can direct his overall care? You say you have not had a lot of luck there - what kind of doctor is managing his care?

My PM is an anesthesiologist. My daughter's primary was a neurologist, although he referred her to the anesthesiologist for much of her care. As you have been dealing with this for a couple of years I expect you know quite a bit about the process of crps, and that he has had the usual rounds of nerve blocks?

You didn't mention how he was doing while he was on the Neurotin or what the reason for weaning him off it is. The ER is generally NOT up on CRPS and you may even find (OMG!) doctors who don't "believe in it" there.

I take clonazepam for spasm relief twice a day, but his appear to be quite severe, and from what i have read the baclofen is for such cases, but he had a bad reaction to it. Maybe your PM could prescribe something for him to take with the baclofen to reduce those side effects.

Since going back on the Neurontin have his other crps symptoms been reduced?

It is SO difficult for a young growing boy to experience this especially at that age. I am sure he wants to be out and about with his friends. For old folks like me (52) the condition is isolating. I can't imagine how difficult it must be for a 12 year old who cannot do what "the gang" is doing.

Sorry, this post is getting a bit long, but I really feel for you as a mom. I can't recommend a doc in your area. I did a Google search:

"pediatric pain management physicians minnesota crps rsd"

which turned up a list of some doctors you might consider. I'm not sure where you are in Minnesota (I used to live in Minneapolis - brrr!)

Also, for YOU! RSDHope.org has a site for caregivers, and one of the items on the site is an RSD Hope Teen Program offering kids the chance to chat with other kids.

You need to make sure you are getting what you need in order to be there for your baby. (My baby is 22 now, and has been in remission for almost a year, but there are signs that "it" is returning).

Take care. Hope there is something of value in this post for you. I truly care and hope that your son is able to find the right combination of medications and treatments to live a full and happy life.

Love,
Jenny

Hi Kristen,

Welcome, I am a mom of a child with RSD/CRPS, it is a horrible, horrible disease. She was misdiagnosed for several years. She was 11 when it began, she is now 19. I am going to give the best advice you will ever hear. Take him to an in hospital pain program. My daughter did Cleveland Clinic. He is young he could go into remission. You have to be diligent. But, you can't do this alone. If you are on FMLA make the time to call the Children pain clinics. There are Ronald McDonald houses to stay in. The longer you wait the worse it will get. He needs PT/OT/Pool Therapy, psychotherapy, and to learn to live with this pain. There are so many things that they are taught. My daughter still uses the techniques that she was taught. It is a grueling, brutal program, I will not lie. But, it did give my daughter her life back. I am not saying it will cure him, but it will help him. My daughter takes Cymbalta for her RSD, which has worked for many years. She did not do well on neurontin. She also takes baclofen, it gave her headaches as well, but they went away after a while.

I hope you take my advice, my daughter has had a long painful life, but she is now in college and dealing with her pain. She learned many techniques to help her with her pain, through the program. Give it a shot, it is worth a try. I will pray for you and your son, stay strong mom, you are his only advocate, so push forward for him.

Sandy

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!

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.