heyloura
heyloura
It’s just over a month since I shared that my daughter has pediatric CRPS. Hopefully we’ll get her into Boston Children’s Pediatric Pain Rehabilitation Center this summer/early fall. We’re on a waiting list, for a case review, to get on the official waiting list 🙄. It’s tough to see things worsen and not b... heyloura.com
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pratik
pratik

@heyloura Fingers crossed here too. Can’t imagine how she feels

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heyloura
heyloura

@pratik Thanks, she's keeping her spirits up and keeping busy.

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In reply to
larissaking
larissaking

@heyloura more fingers crossed! I was diagnosed with CRPS last spring, and I'm doing so much better now. I think I'd rather have CRPS myself than watch someone I love suffer with it. I don't know much about pediatric CRPS, but I can point you at some adult success stories if your own spirits need lifting. Hang in there! It's not easy, but it's possible to recover.

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heyloura
heyloura

@larissaking I'm sorry you had to deal with CRPS and I'm so glad that you are feeling better. It's hard, since I never want my kids to suffer, and 11 is hard enough without a chronic pain condition. As I understand it, pediatric CRPS is similar to adult CRPS, in terms of typical symptoms and presentation. But kids tend to have better outcomes with treatment. Especially a multifaceted treatment approach. I'd love any positive stories you could toss my way. We're dealing with the symptoms spreading to other limbs, from legs/feet to an arm. But on a positive note, she can get around without a cane now and is back to her dance class and playing outside!

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larissaking
larissaking

@heyloura in my experience, symptoms spreading is a good sign. It’s solid evidence that there’s nothing wrong with the body, that the brain learned how to do this trick and it can also unlearn. Maybe that’s why kids tend to have better outcomes.

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larissaking
larissaking

@heyloura playing and dancing are great! Dancing was a big part of my early recovery. It was fun, and helped my nervous system get over the fear of moving and putting weight on my feet.

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larissaking
larissaking

@heyloura here’s an interview with a woman who recovered from CRPS: youtu.be/bgr4pMs7R...

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larissaking
larissaking

@heyloura and here’s another CRPS success story: youtu.be/m9AXDUJud...

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larissaking
larissaking

@heyloura and here’s Dan Buglio talking about whether or not CRPS is curable. He says it absolutely is. I can find non-Dan sources too, but he’s one of my favorites and has helped me a lot. He makes it simple to understand what’s going on and how to undo it

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larissaking
larissaking

@heyloura oops! Forgot the link: youtu.be/gLT-E2QEh...

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