Well...6 weeks now my 15year old daughter has been in a bad RSD flare up. Now school, church or anything. She is just plain miserable. We moved last fall from Texas to Oklahoma and have made 3 trips since Christmas back to Dallas (5 hours) to see her doctor. He is great but has exhausted all he knows to do for her. She just isn't improving. He sent the paperwork to get her into a clinic in Tulsa because he felt like the long car ride did not help her after receiving ketamine treatments. We found out yesterday that they have denied her because she is a child. We can't find anyone in the state of Oklahoma to treat her. No one treats children. Now I am an intelligent person and I figure there have to be people under the age of 18 in oklahoma with RSD who need treatment. Do they all go out of state? This is just crazy! We don't know what to do! The children's hospitals don't have pain management programs and the neuros won't see her....anyone with ideas???

I am so sorry you have to have such a challenge to just get a doctor. Maybe ask your doctor to call the people who denied you and try to get you in. That has worked for me in the past. A doctor sometimes can get more attention than the patient. Keep going and never give up no matter how much they say no. As a mom we become fierce when it affects our child.

This is just heartwrentching news!! As a Mom, this has to be so hard on you.. our children, we part the waters for them and you along with her are in such despair...I, too am with the advice with smile..Please, what do you have to lose by calling and ask if the Dr. can recommend getting her in for treatments..Dr's do have pull... In the mean time..ask the Dr. to also do some homework on your behalf to see and recommend an RSD Dr. in your area...if they can't help you then ask who can!!! Pronto! RSD is miserable... and we really need professionials who care.. walk along aside of us to help us thru our days... I am so sorry.. call them first thing this morning..with insistance..

Let us know how it goes!

Hugz, Kathy

I am very sorry about your daughter I also have a 15 year old, not with RSD, I am the one with the RSD but I can't imagine it.

I have had RSD for 6 years and have been seeing doctors in NYC, we are lucky to live close, an hour and a half, away. What I have discovered is that most good teaching hospitals have the best PM Programs. Did your daughter have an inqury? Living in OK demographicly your are in a tough spot but I believe there is a very good childrens hospital in St. Louis also Vanderbelt Univ. in Tennessee. I would try and look in that direction. I have seen a small amount of children in the facility I go to I think you just have to find the right place. I think a private doctor is not going to really be able to do anything. RSD treatments are expensive and it takes a really good facility to be able to treat RSD patients the correct way.

I wish you all the best.

Gabbycakes

Do they have a University Hospital in OK. I personally don't like them because they are a teaching hospital. You have to watch and make sure they don't make a guienna pig out of your daughter. The one we have in Denver is a joke but others say they have good luck with them.

My second suggestion is find a good PCP there. You are going to need one for the family anyway and then he might be able to get her into places that you yourself can't. You might find one that knows something about cronic pain also. Mine is a PCP/ Sports Medicine Dr. so they are out there.

I wanted to say also that Kentucky has a very good Childrens Hospital with Drs. called Nortons Children's Hospital.

I am hoping though you can find someone close to home. The drives are horrible.

Good luck,
Ada

I feel for you and your loved one! You could check out the RSD/CRPS Treatment Center and Research Institute in Tampa Florida.
http://www.rsdhealthcare.org/

"Additionally, there are children who suffer from RSD / CRPS and receive treatments that are only available through the Institute.
The Institute, under the direction of Anthony Kirkpatrick MD, PhD, devotes significant efforts to educating physicians worldwide on RSD / CRPS".

I hope her flare ends soon.

jim

Hi. I am sorry your daughter is struggling. I also know how this takes a toll on the whole family. Anyhow Ihave traveled a lot for this condition and care. I am 31 but anyhow my best pain doc was one I found by calling a major hospital in my area and explained my situation to the pain clinic. They suggested a specific doctor and then later I had found someone else who had rsd who had seen him. Truly he was better then some of the weller known rsd docs. So I encourage you to call the major hospitals in your areas pain clinic and your situation. Often if they can't help you they can direct you to someone who can.

Hi Mom, I'm so sorry the situation you and your daughter are in. The Cleveland Clinic has a children's hospital. Some with RSD have gone there. If you can find a local Dr. for your daughter that is knowledable about RSD and willing to coordinate treatment with out of state specialist. rsdhope.org is another site that may give you some direction.
Please let us know how you both are doing. your friend and another mother, loretta with soft hugs. I am the one with RSD when my daughter was 15 She is now 30.

Another idea, if it hasn't been mentioned, is you could call your insurance company, and ask them for a recommendation.
It seems odd that you can't find a children's Neurologist...

I really wish you and your daughter the best!

pete

I have read that both the Children's Hospital of Philadelphia ("CHOP") and the Boston Children's Hospital - which is located in Waltham, Ma - both have excellent pediatric PT programs geared towards kids your daughters age. See the RSDSA website (RSDSA.org) and search under the "Kids" or "Teenagers" link. There was a good article about the success of the Waltham, Ma PT program within the last 6-8 months in the RSDSA Review magazine.

If you can't find it write me back and I'll find it for you. I truly wish you the best of luck. I have often said that I am profoundly happy that it is me that is sick, not my husband or my kids, I don't think I would be able to stand it if it were them.....please don't forget to take care of yourself, too...XOXOX Sandy