So now a pediatric physical therapist is coming to the house once a week. She's fantastic - high energy, encouraging, willing to let him go at the pace he's comfortable with. What a treasure. So different from the last pt place we went.

It didn't take her long to figure out that the ortho boot (which he uses to walk any distance) and the roller blades keep his foot at a 90 degree angle, and that his continuing pain is caused by the dorsiflexion of the foot with weight bearing. I'm not really sure if that points to maybe the hardware really is the problem. I suspect it is. I wish it wasn't so risky to take it out.

She wants to get him in a brace (short term) to give him that 90 degree angle, to get more functioning back, with specified time each day out of the brace to keep all the muscles active. He still has quite a bit of atrophy in that calf and foot.

If he could just rollerblade everywhere he goes, he'd be good to go.

Great that your son is getting some treatment that you feel is appropriate to his needs. It's so interesting that he can rollerblade. I hope you continue to find more answers.
~mama mac

It's not something he could have done even a few months ago. For a long time, even car vibrations hurt. To be able to tolerate the vibrations tells me the damaged nerve has come a long way towards healing.

Did your son end up getting a brace, and if so did it help him get around easier? This sounds familiar to what happens when my daughter tries to walk on her right foot...

Thank you.

He got it about two weeks ago. He hates it because it makes his foot too stiff.
He has a lot of hardware in his ankle from multiple fractures, which makes it stiff anyway, and the brace adds to that, so he ended up not using it at all.

It was going to be temporary anyway and was designed to adjust for more and more flexibility. For him, the brace was something we looked into because something is pinched inside his foot when he bends it up. Immobilizing a limb, like what happens in a brace, is not typically a great thing to do for CRPS.

You got a lot of great advice on another thread. If you want one thing to start with, it's the pool. Swimming, kicking, walking, lunging, squats, steps, anything and everything that keeps it moving without much pain. We did a lot of "volleyball" in the pool using a beach ball, laps, walking, etc. So so sorry you're going through this. It's incredibly difficult on a mom's heart to watch a child suffer. Keep us posted on her progress.

Was there an injury that triggered it?