Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 11-28-2016, 04:22 PM #1
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Default Hope for children with crps

I wanted to post this, since this was one of the first forums I found online when I started googling when my daughter was diagnosed with CRPS/RSD well over a year ago, after suffering for 6 months even before that. And everyone in here was so kind and supportive to me. She was 9 when she was diagnosed, and she's just about to turn 11 now.

By February of this year, her CRPS in her foot, had become so bad that she was in a wheel chair, and could not tolerate even a sock. We had to go out, and it was -20 degrees F, and she still couldn't put on a sock. She couldn't use crutches, because the vibrations from them hurt too much. We were on the waitlist for the PPRC at Boston Children's Hospital.

She began that program at the PPRC in February, and was there for 7 weeks. It was grueling. She was in PT, OT and Psych for 8 hours a day, and then 3 more with her dad and I in the evening. But, the program worked for her. They got her out of the wheelchair, back on crutches, then one crutch, then no crutches. They got her back in socks, starting with literally 10 seconds of wear at a time, and slowly building her tolerance.

She walked out of the program on both feet. She still reported pain levels of 8-9 constantly, but she was moving again. She was walking with a limp, and her muscles had deteriorated so much in her right leg that she wasn't able to run or support her self with just that leg yet.

After we got home, she continued with out-patient PT, and worked so hard. Each new accomplishment was amazing to us. Pushing on her scooter, riding her bike again, and finally running.

This fall she joined her school's cross country team, and now she's doing rock climbing, and she just got back on her snowboard. We don't ask her about her pain levels, as that's part of what you learn at the PPRC, but at her last followup, she's reporting levels closer to a 5, and her sensitivity to touch seems to be gone. She's on no medication, and she's sleeping well. I can only hope that next time she follows up, she'll be reporting complete remission.

I don't know what the future holds for her, but this is the post I would have wanted to read when I started searching. There are some great programs out there, and there are some wonderful Drs and therapists, and the one's at the PPRC changed the course of my daughter's life.
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Old 11-28-2016, 04:45 PM #2
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Dear Buffy,

What fantastic news! I pretty much teared up reading your post. Thank you for the gift of hearing about your daughter's improvement. I can only imagine how blessed and relieved you feel.

There are indeed some wonderful programs and healthcare professionals out there and your story is a reminder to never give up and to keep searching for great care.

You must be so proud of your daughter and the astounding amount of courage, grace and resilience she has. The fact that she is now running Cross Country is truly amazing. That requires an intense amount of dedication and discipline as we XC families know. As they say, it's one "hill" of a sport.
All that activity is great. My PM has told me the most important thing is to use the limb and that activity signals the nerve to heal. From my own experience I really believe that's true.

I too hope that her next follow up shows even more improvement. She has come a long way already! Her mind and body are obviously intent on recovery.

Know that your daughter and family are in my prayers. I will continue to send healing thoughts and hugs and hope she reaches that full remission, Thanks again for the wonderful news!
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Old 11-28-2016, 05:14 PM #3
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That is great news! It's always so nice to hear when another CRPS sufferer is making such great progress. Being able to run, go rock climbing and snowboarding has to be such an uplifting experience for a young individual.

Thank you for sharing the great news. We all need to hear some from time to time to remind us that remission and recovery are possible.
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Old 11-28-2016, 06:52 PM #4
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Default Great News!!

Hi Buffy

I am new to this forum myself. Your post brightened my day! I am so happy that your daughter is doing better!! I hope she continues to do better and better everyday!!!!!!
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Old 11-29-2016, 05:47 AM #5
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Children have something called growth hormone that supposedly helps them out majorly. As adults we no longer have that. I believe there were once studies, or they intended to do studies - not sure.

Anyway that's great news for her.
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Work related (car) accident September 21, 1995, consequences:
- chondromalacia patellae both knees
- RSD both legs (late diagnosis, almost 3 years into RSD) & spread to arms/hands as of 2008
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Old 11-29-2016, 09:18 AM #6
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That is fantastic news...thank you for sharing. They say CRPS is use it or lose it...and that is so true. Your daughter is so brave and strong to keep going in spite of the pain...such an inspiration. I hope with time that she gets better and better. Thank you again for sharing this amazing news!
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Old 11-29-2016, 10:36 AM #7
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Thank you so much for taking the time to share this with us. Your daughter's courage and perseverance coupled with a supportive family and an excellent medical program resulted in amazing progress. Congratulations! It is so good to be reminded that there is hope.

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