i'm a newly diagnosed 15 yr old girl...I was wondering if there was anyone else my age out there...I would love to hear from you

Dear 15 year old,
I have a daughter who is 9 years old who was diagnosed with Reflex Neurovascular Dystrophy in November 2002 or RSD is another name. She was admitted to Childrens Hospital and was diagnosed right away after several misdiagnoses at home. She has total body involvement. She arrived at Children's Hospital in a wheelchair and unable to walk due to severe pain, muscle spasms and transient paralysis. The treatment at this hospital was 5-6 hours of intensive physical therapy 5 days a week for three weeks. She went home pain free. She was immediately taken off any medications and only physical, occupational and psychological therapy. Some kids do not have relapses after the treatment period. Though she does have intermittent boughts with pain. She is suppose to exercise daily. Which is hard for her to do when she isn't feeling good, but it does work.
Parent of Child with RSD

Just out of curiousity and the fact that its 1220 am and I hurt too much to go to sleep. How are your parents doing with this? You and your family are of course welcome to come here and post anytime. Lots of people on this site are willing to lend an ear.

[This message has been edited by moderator2 (edited 02-05-2003).]

Hello Snowbunny! I find your message particularly encouraging. My 10 year old daughter has recently been diagnosed with RSD in her leg. I was wondering how long it was between her injury and her diagnosis? How long was it until her total body was involved? What are your daughters capabilities now? Is she running on the playground? Does she walk around the stores? I am in the Boston area, which Childrens Hospital did your daughter go to?

Hey, my name is Pearl and I am 16 years old. I've had RSD since I was 8, so if you want to post and talk to me, that's fine. I'd be happy to answer any questions you want. You can e-mail me at [removed.com] too. Hope everything's going great!

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[This message has been edited by moderator2 (edited 02-18-2003).]

Anybody interested,
Looking back my daughter hashad RSD,Complex regional pain syndrome,reflex neurovascular dystrophy among three of the names for this disorder for about 2 years before total body involvement occured. For her it was due to a serious of injuries to her spine, one last summer when she told me she couldn't walk. Which did eventually resolve in a matter of days. Then in the Fall she burnt her finger which caused her back to become very painful to touch even the skin and she was unable to walk within approximately a week along with other involvement. She was hospitalized and got the chicken pox while in the hospital. The pain was unrelievable. She went to Children's Hospital in Seattle and went home pain free. She has had minor relapses but was doing very well running, playing basketball and doing gymnastics until the last 3 1/2 weeks. She now in a more involved relapse period and is headed for Childrens Hospital once again. They tell me the relapses should resolve by the 6 month mark after her initial therapy. The have treated over 500 children and this therapy has been very successful. Sorry it took me so long to write back I have been busy with my three children, Katie's relapse and I work as a nurse.

Wishing all the best,
Snowbunny

snowbunny,
in your message you say that the treatment that your daughter had has historically been successful. What treatment did she have? Has she had surgery? What exactly was done for her? What did you think was particularly successful? Thanks.

Hi rsdfighter.
I would like to know what you did in the 5-6 hours of PT each day. Did you do contrast baths? Tens unit? walking? aqua therapy? Do you or did you take medication? Have you had surgery? Was there any biofeedback therapy at the program that you attended. Please give me loads of specifics.
Thanks!

My name is Caryn, I'm 18 years old and was diagnosed with reflex neurovascular dystrophy about two years ago. I've had it since my freshman year of high school (I'm now a freshman in college) and was misdiagnosed by everyone under the sun who had no idea what was wrong with me, so they usually just guessed. I've had so many x-rays of my legs taken, so many tests run, by so many doctors and specialists. The pain was so severe some nights that if I only got one hour of sleep I was lucky. Some doctors encouraged me to stay off of it, so I was on crutches and in and out of all types of casts for about six to eight months. I cannot even count how many doctors told my I'd just sprained my ankle. It started out in just one foot, but then spread to both (which I'm pretty sure doesn't happen with a sprained ankle). My final diagnoses came from a doctor who actually specializes in rheumatoid arthritis. I walked into the office, the nurse came in, ran a couple of tests, asked me some questions, and then went and got the doc, who also just so happened to be a longtime family friend and a member of my church. He walked into the office holding my bone scan results and said "I have some good news, I know what's wrong, and this is not like when other doctors have told you they know what's wrong, I really do know." At that, I just burst into tears. I still get teary eyed thinking about that doctor, he was my lifesaver. He told me that the recommended way of getting rid of it would be to do the six hours of physical therapy everyday for about one to two weeks. Now, anyone who knows me, knows I am not at all athletic, and after two hours of "trial" PT, I was dead to the world. So, they gave me a recommended PT program to do at home, which I did for a little while, and it got a lot better then, but not all the way. The doctor who diagnosed me works at a big children's hospital in Seattle, Washington where every year he gets kids with RND. The pain still comes back, to the point where I can't sleep. My friends never believe me when I try and tell them how bad it hurts, and they certainly don't believe me when I tell them what the recommended therapy is. I have suffered severe depression as a result of this desease, but am happy to report I'm doing better with dealing with it. If anyone at all needs anyone to talk to, I am always here. I know the struggles that we go through. And the frustrations that are there. My parents for awhile even thought I was a hypochondriac. Anyways. Let me know if I can help you out with anything.
Caryn

I am 17 years old and I have had RSD since I was 12.

Hey I just wanted to let those of you from Washington know that there is a new RND/RSD doctor at Children's in Seattle. She is wonderful and I now have hope for recovering.
I have some questions for those of you with RND/RSD. Have any of you found that there was some kind of emotional issues involved with your condition too? I mean I have some severe alcoholism issues at my house. I'm also a major perfectionist and I'm very competitive. When I get stressed out my pain gets worse. Also my concentration is just horrible I can't focus in school anymore (the doc said that that was part of the illness too)....
This whole illness is the most frustrating thing that I have ever had to deal with. I'd love to talk to someone who understands and maybe parents so that my mom has someone who understands what shes going threw too. my email is [email removed].com

[This message has been edited by BHSdancer55 (edited 05-05-2003).]


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[This message has been edited by moderator2 (edited 05-05-2003).]