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
Quote:
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.
Kristen
|