Hi JimKing,

I live in Tampa and my 16 year old daughter has RSD and of course it took several years for the diagnosis to come about. She has gone through two pain rehab programs for three week intervals at the Childrens hospital at the Cleveland Clinic, which helped with the coping part of RSD, but not the pain. Of course she is taking many drugs for pain, is in pt/ot, pool therapy and symatheitc nerve blocks, four to be exact with no relief, and of course what ever else they send her to. She has had another severe flair up and we went to see Dr. Kirkpatrick at the RSD Institute here in Tampa. We loved him, he has a unbelievable understanding of RSD. My daughter is scheduled for Ketamine Infusions in the next week. I have talked with many other patients that have gone through the Three day four hour infusions and have been pain free for a minimum of 5 months. These are adults.
I know that they are expensive, but here is some advice. I am financially strapped due to all of the medical treatments over the past six years with my daughters fight with RSD, especially taking so long to be diagnosed. But, I liquidated my 403b, they have new laws now, that if you have out of pocket medical expenses they will liquidate retirement funds. The institute I understand will fight with you to get reimbursed by your insurance company. The good thing is that the infusions have been approved by the FDA, if there are people with RSD willing to go through this and show that it works, even if it is only some, maybe we can find a cure for this horrible disease. Dr. Kirkpatrick volunteers his time at the Clinic, he receives no money for treating any patient. The cost is in the surgical center and with the ketamine. It costs a total of $8,000.00. $500.00 for a two hour consultation and $2,000.00 for three days, that you pay before each infusion and then you have 30 days to pay the final $1,500.00.

As a parent I am so scared that my daughter is going to be taking these infusions, but she has a fighting chance to go into remission. If not, at least we have tried...Like I said I live in Tampa, and if anyone is heading to the Institute or needs more information I would love help, you can send a private message if you need help in Tampa. I am 20 minutes from the RSD Institute. On another note, after the 6 years of finding someone that understands my daughters illness, Dr. Kirkpatrick was the only one. We walked away feeling that someone finally believed!

My thoughts and prayers are with all of you and I pray for a cure...

Sandy