Kids with RSD??
 

Hi, I'm new here, just came over from another board. I recognize some names which is a nice start.

Our daughter was diagnosed with RSD at 15. She's been in and out of remission 4 times and is back in remission now. We've had good success with Hyperbaric Oxygen Therapy but she does continue to need repeat treatments.

Anyone have kids with RSD? Why are so many people getting this??

I'm sure we talked on another forum, it's not that so many more are getting it just that more are being diagnosed earlier but not enough,according to a paper published last May there may be as many as 460,000 un/misdiagnosed in the UK. Other countries are doing better at finding sufferers. In spain it is taught in medical school

Hi FaithMom! It's so good to see you! and I'm SO SO glad your daughter is back in remission!!! My daughter is, too - the "booster" round of Calmare worked well.

Re your last question - my sister heard one interesting bit of info - there seems to be at least a loose correlation between RSD and electronics (not radiation, but rather how electronic use affects the brain's wiring). Anyway, it's not supported by any major studies yet, but both RSD and electronic use are certainly on the rise.

Hi, SloRian. I've been trying to figure out how to send you a pm but haven't figured it out yet, lol.

Yes, dd is ok now. YAY!! And your dd is too!! Another YAY!!

I haven't heard that about electronics. Do you have more info?

I'll ask my sister next time I talk to her. She did hundreds of hours of research on the internet, and that's one of the things she came across. Not that we'll be able to take anyone's electronics away! :D

I'm 18 and have had RSD since I was 12. It affects my left leg, right arm and possibly back.

If you or your daughter ever want to talk, I'm here :) I know how stressful it is going through something so horrible at such a young age, especially when dealing with school, friends not understanding etc. I think talking to someone of a similar age who understands really helps sometimes :)

I hope your daughter is doing better :)

Hi Ali12, thanks for your kind offer to chat with our girls :) It really does help to have people understand!

I don't know about FaithMom's daughter, but my daughter doesn't like to talk about it. We were able to get her into remission after a year, and she just doesn't want to talk about it much.

I'm so sorry to hear you've had it since 12 :( My daughter got it at 16. It's just so awful!!! but seems even worse for young people to get it. How are you coping with it? What treatments have you tried? What works/doesn't work for you?

Thanks again for your kind offer and good wishes :)

Hey! I am so sorry to hear your daughter was diagnosed at 15. I was diagnosed at 13 and am now 21 and know how hard the journey is. I tried the hyperbaric oxygen chamber and unfortunately had no relief. The fact that she is having a good reaction to it is awesome! I know how expensive the treatment is but with RSD if you have found something that works (even temporarily) I would stick with it!

Has she had any other treatments that helped her? Has she tried medication? I know for me Cymbalta has helped me more than any other med out there. My doctor told me the other day that with neuopathic pain like RSD that when they prescribe meds they are happy with even slight pain relief. She said a 30% pain reduction is considered a success. I hope you find this helpful and are able to keep your little girl in remission as long as possible!

I was talking about what might be behind the increase in RSD cases :)

I'm aware of the Civil War doc's report - very interesting, and I'm glad that it has that long history - sometimes it helps people understand a little bit more that it's for real.

There could be many things behind it. I think it's good to think outside of the box.

Actually, studies have shown that more people are not getting it. In fact, it has been over diagnosed due to doctors new found recognition of crps and the importance of quick diagnosis. A study of 100 patients referred to yale for treatment of crps showed that only 8 actually had it. Most had a differential diagnosis after further investigation. How many people do you know that have textbook crps with every symptom that the dr can validate in the office? Not to say people don't get it, but I believe you see it more when your eyes are open to the possibility of it.

Btw, I was a kid diagnosed with crps at 15 best of luck to your daughter and her remission. Any questions you may have from an adults perspective on what it s like being a kid with it feel free to ask.

[QUOTE=mandi1;1003274]Actually, studies have shown that more people are not getting it. In fact, it has been over diagnosed due to doctors new found recognition of crps and the importance of quick diagnosis. A study of 100 patients referred to yale for treatment of crps showed that only 8 actually had it. Most had a differential diagnosis after further investigation. QUOTE]

Wow, that's interesting! Can you supply the reference or thumbnail to that article please? Thanks!