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