Momofrsd, I'm SO glad to hear that your daughter responded well to the tx! Please keep us informed of any updates. My daughter's first remission took 15 treatments and lasted 3 months, then she needed 4 booster treatments and the second remission lasted another 3 months (I think it could have been longer, but we had a series of very physical/emotional stressful events and I think it knocked her out of the remission). We're several weeks into her third remission. I'd be interested to hear how your daughter gets on :) I hope it lasts really long!

advice on calmare
 

I would really love your advice. My 17 year old daughter has had RND/ RSD /CRPS ( the beast by many names, I say) for 5 years now. We have been to about 40 Drs/therapists including 3 weeks of treatment in Pennsylvania - but have had no pain relief. I am desperate to allow her to finish her senior year and go on with her life and her HUGE dreams - she has already battled through so much and lost so much - we CANT give up now!
I am just now hearing of Calmare and your results are giving us hope again despite the lack of clinical trials.

I really want to try this - my question is this: There is a certified clinic here in MT - about 8 hrs away ( A miracle - up til now I hadn't heard of another living soul in MT with this or anyone who knew ANYTHING about it) -- but there are not even anecdotal reports of success there which I have found ( and actually one really negative report). The NJ clinic seems to have at least anecdotal successes -- and many!
Would you try here in MT first , or seek elsewhere? There is a clinic in Utah with success stories... and of course there is NJ....
What would you do? Please help- totally at the end our rope

PS -- FYI her pain is not localized

Hello, mtgoats!

I'm so sorry to hear about your daughter :( There seems to be a trend with teenage girls, like yours and mine. It's SO hard to watch them in such pain :(

I can't give medical advice because I'm not a doctor, but I can certainly share my experience and what I think I would do in your situation. I took a quick look at the Calmare site, but I don't see the "Calmare certified" mark by the Montana site, so I'm not sure which one you're talking about. Personally, if at all possible, I would recommend going to NJ. The dr and staff are wonderful, and they are specializing in RSD/CRPS. The stakes are so high that we decided to do whatever had to be done to get our daughter there, because our research showed that he had by far the most experience with RSD, and hers had spread body-wide. He won't charge you for the first few treatments if it doesn't work, either.

My daughter has had to have 2 booster treatments. There are 2 places in AZ, and first we tried the one that was farther away because it was certified, and it worked really well. The next time she came out of remission, we decided to try the closer one, which was NOT certified, and it actually made her worse, so we had to go back to the other one.

If you decide to go to NJ, they can tell you about which hotels to stay at (we helped negotiate a good rate at one hotel that has a kitchen area, which was great for saving money on food).

Best wishes and prayers for your daughter, and please let us know whatever you decide to do. It's helpful to share information with others. And please feel free to join in the other threads, because it's really helpful to talk to people that understand! :grouphug: No treatment works for everyone, but it sure worked for us, and I've heard it works for many.

I'm so glad it worked for your daughter. I'm sure it's awful to watch your child go through this terrible pain. I would assume it wouldn't work on me due to mine being full body. Although I've considered it, but now adding more complications. It might be worth a try. Nothing else is.

I wish y'all continued success!

TK

thanks
 

:confused:I agree I would like to know more too..like what is it?How to they apply?how long does it take?anything that would help us understand..thank you very much:confused:

tens machine
 

I have tried the tens machine .I cannot use it.it makes it worse.so be careful:(

Thank you, TK! Yes, it's pretty awful watching a young girl dealing with this :( But full-body doesn't matter - my daughter's was full-body, too. They start at the point of the initial injury, though. They have also dealt with people that have had it for years.

Personally, I think it's worth a try, especially now that many places don't charge for the first few treatments if it doesn't work. I'd recommend only going to the certified ones, though - we had a bad experience going to one that wasn't certified but was a lot closer. It just wasn't the same.

I think I described it earlier in this thread - go back and take a look :) But if you have more questions, I'd be glad to share our experience.

We had tried a tens machine before, too. In our experience, it's very different in several significant ways.

An update for those that said they are interested :)

Christmas was special this year, because if we made it to Christmas without my daughter coming out of remission, it would be her longest remission (she's in her 3rd remission) ...

Anndddd ....

She made it - and is going strong!!!!

I thought she was going to lose it a few weeks ago, but she turned a corner, and is now in her longest remission and going very strong!

Wonderful news! Thank you for sharing your experiences. Your daughter is blessed to have such a strong parent by her side!