@larissaking This is in reply to [my last blog post](https://heyloura.com/2024/06/02/and-we-wait.html). Micro.blog is having a little trouble with posting it 😆. So hopefully this one goes through: Thank you. I really appreciate it. I'm also very hopeful my daughter can kick this into remission. This program at Boston Children's is wonderful. The space is fantastic and everyone cares so much. Every week they have a kid or two graduating that they do a quick ceremony for. Not a dry eye in the place. They also have great outcomes. Using mindfulness, learning the role pain plays in the body, ample coping strategies, doctors, psychologists, lots and lots of PT, OT and art/music therapy. The paper I read had about 88% functional and pain-free at the 1 year mark, and about 35% reached that outcome at the 1 month mark after the program. Even those that weren't pain free typically had a marked reduction in pain and functionality gains. The long term 5+ year study still backs that up. Also, thanks for the resource links you left on my last post. I did look into them 😊 I also read "When Your Child Hurts" by Rachael Coakley and I'm using lots of those strategies. Apparently a lot of things that parents do by default for acute pain is actually detrimental to chronic pain. So a learning curve there for sure.

@larissaking This is in reply to my last blog post. Micro.blog is having a little trouble with posting it 😆. So hopefully this one goes through:

Thank you. I really appreciate it. I'm also very hopeful my daughter can kick this into remission. This program at Boston Children's is wonderful. The space is fantastic and everyone cares so much. Every week they have a kid or two graduating that they do a quick ceremony for. Not a dry eye in the place.

They also have great outcomes. Using mindfulness, learning the role pain plays in the body, ample coping strategies, doctors, psychologists, lots and lots of PT, OT and art/music therapy. The paper I read had about 88% functional and pain-free at the 1 year mark, and about 35% reached that outcome at the 1 month mark after the program. Even those that weren't pain free typically had a marked reduction in pain and functionality gains. The long term 5+ year study still backs that up.

Also, thanks for the resource links you left on my last post. I did look into them 😊

I also read "When Your Child Hurts" by Rachael Coakley and I'm using lots of those strategies. Apparently a lot of things that parents do by default for acute pain is actually detrimental to chronic pain. So a learning curve there for sure.

2024-06-03 2:58 pm

Embed

larissaking

@heyloura It worked!

A lot of the things we do for ourselves when we're hurting are detrimental to recovering from chronic pain. Makes sense that the things we need to do for our kids would be counter-intuitive as well! I love that you're feeling hopeful. I imagine that's really helpful for your daughter, as the thing she really needs to recover from is fear. She's lucky to have you in her corner.

For whatever it's worth, I'll be over here cheering for both of you!

2024-06-03 8:51 pm

Embed