[doug1017]

I live in missouri and my son is 11 yrs old and has rsd. A foot doctor has been treating him and he doesnt know much about treating rsd so its time to switch drs. I have been looking and searching but I cant find any drs that deal with rsd that will take kids. Does anyone know a good rsd dr for kids I am by st louis but will travel wherever needed

[alt1268]

Doug,

Welcome to the group. Sorry to hear about your son having this horrible monster. Hopefully someone can answer your question in the mean time Did you check RSD america or rsds.org. They have lists of dr.'s.

[AintSoBad]

So sorry for your son.

Also, you can try a good university hospital, call the chief of neurology, or ask the person who answers, which neuro treats rsd..

Best Wishes!

Pete

[keepselling]

** doctor Robert J Schwartzman, Drexal University College of Medicine Philladelphia PA 215-762-6915. He is the for most doctor, wrote all the books and trained all the doctors in RSD care. The only problem in can talk up to two years to get in. leo does Ketamin treatments.

[LIT LOVE]

There have been several posts about various children's hospital programs. If it were my child, that's the route I'd take if at all possible... Treat aggressively asap. Children are more likely to respond to treatment than adults, and he could go into remission. Please take a look at Dr. Hooshmand's 4 F's diet for RSD as well. Good luck!

[gabbycakes]

Originally Posted by doug1017

I live in missouri and my son is 11 yrs old and has rsd. A foot doctor has been treating him and he doesnt know much about treating rsd so its time to switch drs. I have been looking and searching but I cant find any drs that deal with rsd that will take kids. Does anyone know a good rsd dr for kids I am by st louis but will travel wherever needed

Hi Doug,

Very sorry for your young son. I see you live in St. Lous. We have a neighbor, we live in NJ, who has severe cerabal palsey. About 5 years ago that would of made hime 12 at the time. He and his family traveled to St. Louis to get him treatment for his condition. I know this is a completely different condition than RSD but I remember speaking with the parents or someone close to the family as the area did many fundraisers to get him there, pay for hospital expenses, travel etc.. I don't know the name of the hospital it was St. something I can find out if you can't. I don't know if they do treatments for RSD there but it's close. I got RSD from a fall, broken arm/elbow during a roller blading mother/daughter outing and fell while skating. I went up in the air landed on my elbow hitting steel transition strip, it was a freak accident. The hospital who I finally found in NYC was HSS.Go to www.hss.edu. It's the web site for the Hospital For Special Surgery in NYC and they are a premier hospital for orthopedics and rheumotolgy plus many other conditions. They have an incredible peds. division, it's worth looking into. I don't know if you will find a Peds. RSD doctor but if you start with a peds. ortho or someone who treats foot injuries he can recommend a pain doctor who can treat your son. I have found that pain doctors are the more experienced in treating RSD and can do more extenstive treatments. Many go to a neurologist who also treat RSD. Neurologist can not offer a full range of treatments for pain as a pain doctor can. Most or if not all pain doctors started out as anthestiologist(spelling) I quess that's what gives them a little edge over neurologist since RSD is a pain condition and they are trained in haulting pain.feeling, etc. during surgeries. This is only my opinion, others feel the opposite.

Wishing you and your son the best.

Gabbycake



The one thing I have to say it is getting very hard for patients to get established and to received proper treatment for RSD. Another thought is go to google and search the name Jim Brotch or Jim Broatch or head of RSD Association in Connecitcut. Sorry I'm rushing sorry. He has a world of information he may be able to give you some suggestion.

[daniella]

In my opinion I would only be treated by a pain specialist/anesthesiologist or neurologist that deals with RSD. It is so key from my experience and what I know others who have faced. Then of course you would have a gp or other specialists but in terms of pain control etc.
My best pain doctor I found and way better then at Cleveland Clinic or UCLA was in my home town. I called a university/teaching hospital pain dept and explained I had RSD. They had a pain doctor who dealt with RSD more then the others. I suggest you doing that. If you are able to travel some gave good ideas and though I did not have a good experience I know a teen who did at Cleveland Clinic

[stormywen]

My daughter was diagnosed when she was 11, she's 15 now. She did a three week inpatient program at Children's Hospital in Seattle. There's also one in Philadelphia (CHOP), Boston and Chicago. I know there are more but I'm not familiar with them.
Dealing with doctors who don't understand the disease is the most frustrating thing and a total waste of time and money.

Wendy

Originally Posted by doug1017

I live in missouri and my son is 11 yrs old and has rsd. A foot doctor has been treating him and he doesnt know much about treating rsd so its time to switch drs. I have been looking and searching but I cant find any drs that deal with rsd that will take kids. Does anyone know a good rsd dr for kids I am by st louis but will travel wherever needed

[fmichael]

Doug -

I've also heard great things about the some of programs mentioned, including that at the Children's Hospital of Philadelphia (CHOC), but one program that hasn't seemed to have gotten a lot of play is The RSD / CRPS Treatment Center and Research Institute in Tampa, Florida, which

. . . is dedicated exclusively to RSD/CRPS. It is the world's first institute of its kind. The Institute opened its Center in February 2008, which is approved by the Florida Board of Medicine for Level II surgery.

* * *

Some of the treatments include a 3-day infusion with IV ketamine on an outpatient basis that is critical and not readily available elsewhere in the USA.

Additionally, there are children who suffer from RSD/CRPS and receive treatments that are only available through the Institute.

It's run by Anthony F. Kirkpatrick, MD, PhD, one of the leading CRPS practitioners in the country. Please check out one of his articles, How to Determine the Effectiveness of Treatments for RSD / CRPS, in particular. However, Dr. Kirkpatrick may be significantly more expensive than other providers, where his program's fine-print notes (among other things) that 80% of the expected treatment costs are due up front and the rest within 30 days.

And for what it's worth, I would avoid the temptation of going to the Mayo Clinic. Speaking as a native of Rochester MN, "The Clinic" is wonderful/terrific/great in so many areas, but pain management has never really been one of them.

Good luck!

Mike

[Softspoken33]

Originally Posted by doug1017

I live in missouri and my son is 11 yrs old and has rsd. A foot doctor has been treating him and he doesnt know much about treating rsd so its time to switch drs. I have been looking and searching but I cant find any drs that deal with rsd that will take kids. Does anyone know a good rsd dr for kids I am by st louis but will travel wherever needed

My daughter was finally diagnosed after 7 years of trying and over 20+ physicians. There is an excellent RSD/CRPS physician in South-East Florida. I had no insurance, but the testing was roughly 350.00 (in 2001), and he worked so well with us. I was very impressed with his mannerism and his ability to listen. Look up (google) Space Coast Neurology, Dr. Hashmi.

My daughter has RSD in her left mid-torso, under the rib cage. With the aid of thermal imaging and additional testing he was able to see it, diagnose it, and offer treatment ideas... Thank you again, Dr. Hashmi Since his diagnosis in 2001, as he anticipated, the RSD has spread and is also now in her lower back.

Please do take care, new injuries can bring on new RSD areas.
~~Wishing you both only the very best in finding a great doctor.