NeuroTalk Support Groups - Very Frustrated!

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)

- - Very Frustrated! (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/114973-frustrated.html)

SO sorry to hear that your daughter and yourself are going through all this right now!:hug:

Please know that I DO understand how frustrating dealing with RSD can be and that I am here for either of you if you ever want to talk (my mum is too - if you want her email address, feel free to PM me :)!). I have had RSD since I was 12 years old and am now 15. It is currently in my left leg and both arms. I have had the same issue as you and your daughter in getting medical treatment. We are in the UK (England) so a lot of the treatments used on adults, aren't used on children due to our health service. It took 2 years for my Doctor to try Ketamine and that is the only medication that helps me - though it only lowers my pain a little and my Doctor doesn't like me taking it often because of my age etc (he feels that it could affect my hormones).

I agree with what everyone else has said, please try and find another doctor. I know it can be frustrating - I saw LOTS of doctors and my mum took me for lots of second opinions to see if anyone had any ideas on what could help.

Have you looked into the Intense Physical Therapy Programs?? I'm not sure if there's one in your area but they have lots of good results in most children with RSD. I went on a 3 week intense PT Course at Great Ormond Street Hospital in London and the PTs there got me back walking. I still have LOTS of pain and am not 'cured' by any means but it makes SOO much difference being able to walk again, even if it is just short distances!

I hope things start looking up for you soon. Please send your daughter my love and best wishes.

Alison

Hope you get this!

Quote:

Originally Posted by momw/rsdchild (Post 623404)

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 hope that you receive this after so much time have gone by! I happene to stumble upon this while looking for Jim Broach's (from RSDSA) contact info, and it just touched me. I practice in Fayetteville, AR (two hours from Tulsa) and may be able to help? I am not allowed to post my e-mail here yet (because I am new) but you can find and contact me on Facebook. MY page is called The Neurologic Relief Center.

Dr. Katinka