My 15yo daughter has had full body cRPS for the past two years. She's done the Pittsburgh in patient program and all the pain drugs and physical therapy and acupuncture but nothing has helped. Her pain mgmt doc suggested we look into a 6 week out patient program at Stanford. I know there are other programs out there but this one came recommended, in part because she studied there and it's pediatric and deals with all kinds of pain issues.

Anyone familiar with it or been there?

Mike

I am sorry your daughter is suffering with CRPS. You found a good site for support. You need the support as much as your daughter does. I personally do not know about Standford, and the research they are doing. However it has a good reputation, and at one time Mayo clinic wanted me to go there.

Has your daughter been given the opportunity to try a Ketamine infusion? This particular medication was used on our soldiers that were seriously hurt. The initial studies are very favorable, and there has been reported remissions. The JAMA, Journal of Medicine has quite a few back issues that talk about the studies with Ketamine. Most medical teaching hospitals have great libraries.

In my own case, I had severe spinal issues. I had two (Local) infusions of Ketamine that worked for about 4 months each. The pain did diminish. However the problem had to be dealt with through surgery.

Fusions with whole body CRPS have had more trials, that the type of infusions I had. There are hospitals that do work with Ketamine. Among them is Tampa Bay General Hospital. Inquire if you are able to and at least ask the doctors if they know about these studies.

I hope many others talk to you, and give you more ideas. I hope your daughter can obtain a complete remission.

I will keep your family in my thoughts and prayers. ginnie

I recently met someone whose child went to the Stanford clinic and found it really helpful. I'm sorry that I cannot remember any details, but I know she'd recommend it.

BG