[swimtime]

Hi all,
I need advice for my 13 year old son Matthew with CRPS in his left foot. He is transitioning from pool to gym for physical therapy. He can walk short distances now (20 feet or so) but usually needs to sit and recover for a while afterwards. He is scheduled for a physical therapy session later today (in the gym) but I'm kind of worried about if he's really ready for a 30-45 minute session. They want to push him to get the CRPS in remission, but I'm worried about causing a flare. How do you gage what you're ready for, and what is too much? The therapy place has to show a certain amount of progress in order for the insurance to continue to pay for therapy sessions.

Thanks for any advice you can give.

[Littlepaw]

Hi Swimtime,

I agree flare would not be good for recovery. There should be enough gentle exercise and other things he can do to utilize the time. PT time can include manual therapy on his foot which would great if someone is certified for that. They work on gently manipulating the bones in the foot and ankle. I had this done and it was not uncomfortable and helped worked through some of the kinks of my foot adjusting to mechanical changes. PT was able to justify it for billing. They can also do some ultrasound to the area for five minutes. Add in a little time on an exercise bike, doing the Baps Board for range of motion and time pulling a towel with his toes and he should hit 40 minutes without it being all weight bearing. You do have to push a little from time to know what the limits are, but use common sense. If it's causing pain when you do it the tissue is not happy and you don't know what the later payback will be. I think he will have an idea of what he can do when he starts. He's gotta listen to that foot and PT's gotta listen to him.

Good luck and tell Matthew I said to keep up the good work and don't let anyone push him around. He'll get there just fine. I'm sure they have figured out how to take care of the documentation. Not every one rehabs at the same or a predictable rate.

Littlepaw,

[swimtime]

Thanks. Ultrasound sounds interesting, but after reading about it I don't think he can use it due to the hardware implants and the fact that the most painful area is right over growth plates in his ankle.

I'm not familiar with a BAPS board. He has good range of motion and we do manual therapy and towel pulling every day at home to keep the flexibility. It also helped with the desensitization process because his foot was being touched and moved. I asked them to start mirror imaging therapy with him too, although I'm not really clear yet how it works. I just know I've read that it can be particularly effective with teens because their brains are still growing and changing. They were skeptical but willing to try.

He didn't make it to therapy yesterday because he was already near his pain limit and knew he couldn't handle pt right then. We'll try again next week. I'm trying to figure out how to build his endurance at home. I think the more he weight bears without the orthopedic boot, the more confident he will get that he can do this. The pain management doctor and physical therapist have been after me for a long time to not let him use the boot for weight bearing, but I knew if I took it away sooner, he would stop weight bearing altogether because the pain was too great. Now he's ready. So they can stick it in their ear.

Originally Posted by Littlepaw

Hi Swimtime,

I agree flare would not be good for recovery. There should be enough gentle exercise and other things he can do to utilize the time. PT time can include manual therapy on his foot which would great if someone is certified for that. They work on gently manipulating the bones in the foot and ankle. I had this done and it was not uncomfortable and helped worked through some of the kinks of my foot adjusting to mechanical changes. PT was able to justify it for billing. They can also do some ultrasound to the area for five minutes. Add in a little time on an exercise bike, doing the Baps Board for range of motion and time pulling a towel with his toes and he should hit 40 minutes without it being all weight bearing. You do have to push a little from time to know what the limits are, but use common sense. If it's causing pain when you do it the tissue is not happy and you don't know what the later payback will be. I think he will have an idea of what he can do when he starts. He's gotta listen to that foot and PT's gotta listen to him.

Good luck and tell Matthew I said to keep up the good work and don't let anyone push him around. He'll get there just fine. I'm sure they have figured out how to take care of the documentation. Not every one rehabs at the same or a predictable rate.

Littlepaw,

[Littlepaw]

Hi Swimtime,

Makes sense on the ultrasound. I wasn't thinking about the hardware, sorry about that. A Baps Board is a wide oval board that sits on top of a half sphere. The position and size of the sphere is changable and increases the amount worked by muscles in the lower leg as you rock the board or make circles keeping the edge to the ground. It is great for building ankle strength and stability. I started on it while sitting and eventually moved up up to standing on it. It is a unique piece of equipment and impossible to replicate. We also did resistance exercises with therabands. All those muscles, tendons and ligaments have to be worked and ready for regular weight bearing so PT should be able to justify this too.

Has Matthew tried using a walker? So not cool of course but it might be great at home. What I liked about it was I could make a normal heel to toe motion while walking that felt more natural and I think prepared me better for walking without assistance. Made for a gradual transition because I just leaned on it less and less over time. Mine was a four wheeler and we have hardwood. On regular carpet I don't know, low pile like hotels have was fine.

Littlepaw,

[swimtime]

I'll ask about the board. He does use a band at home with the stretching exercises each day. He just graduated from using a walker to a cane. It's exciting to see progress but sometimes it feels so slow.
We try to go to the local YMCA a couple times a week when we can, because it lets him build overall muscle strength without pain. And he loves to swim, so it provides "fun" therapy. That's important too!

Thanks so much for your help and support.

Originally Posted by Littlepaw

Hi Swimtime,

Makes sense on the ultrasound. I wasn't thinking about the hardware, sorry about that. A Baps Board is a wide oval board that sits on top of a half sphere. The position and size of the sphere is changable and increases the amount worked by muscles in the lower leg as you rock the board or make circles keeping the edge to the ground. It is great for building ankle strength and stability. I started on it while sitting and eventually moved up up to standing on it. It is a unique piece of equipment and impossible to replicate. We also did resistance exercises with therabands. All those muscles, tendons and ligaments have to be worked and ready for regular weight bearing so PT should be able to justify this too.

Has Matthew tried using a walker? So not cool of course but it might be great at home. What I liked about it was I could make a normal heel to toe motion while walking that felt more natural and I think prepared me better for walking without assistance. Made for a gradual transition because I just leaned on it less and less over time. Mine was a four wheeler and we have hardwood. On regular carpet I don't know, low pile like hotels have was fine.

Littlepaw,

[Littlepaw]

It sounds like he is doing great! Really! Ya'll are doing a LOT at home and the Y and he is getting regular non painful input to help reset those nerves. The daily manual massage surely goes a long way towards this. Go Mom! It DOES feel slow during these stages but a slow pace is okay. He is moving forward and will get better and better, that's all that matters. Focus on the long term goal. If continuing to use the walker at home gives him more "up" time without the boot since he can only go twenty feet or so then go for it. No reason not to use it at times if that supports more movement that isn't painful.

I am just so glad to hear your son is doing better. Keep us updated. I know there was a collective sigh of relief when you posted that he was making improvements.

Littlepaw

[SkyDiversMom]

Originally Posted by swimtime

Hi all,
I need advice for my 13 year old son Matthew with CRPS in his left foot. He is transitioning from pool to gym for physical therapy. He can walk short distances now (20 feet or so) but usually needs to sit and recover for a while afterwards. He is scheduled for a physical therapy session later today (in the gym) but I'm kind of worried about if he's really ready for a 30-45 minute session. They want to push him to get the CRPS in remission, but I'm worried about causing a flare. How do you gage what you're ready for, and what is too much? The therapy place has to show a certain amount of progress in order for the insurance to continue to pay for therapy sessions.

Thanks for any advice you can give.

Just make sure they don't overdo it on him. A member of my RSD support group (17 yo girl) was diagnosed in her ankle when she was 13 and during some extremely "brutal" physical therapy, it began to spread up her leg. So be careful. Post surgery PT and RSD PT are two different things, make sure they do it right.

As for the mirror therapy, my therapist used this on me (and I'm 54!) and it really does work. My "good" foot would do the exercises while my "bad" foot did nothing. But watching my good foot in the mirror tricked my brain into believing my bad foot was working out - without experiencing pain. My bad foot actually felt tired even though it hadn't done anything.

Good luck to your son.

[swimtime]

Thanks! How is mirror therapy done with CRPS in the foot? I've seen a video of it being used for the hand, but it was a special mirror box of some kind. Do you just stand in front of a regular mirror? And how long does it take to start translating into better use of the affected limb?

Originally Posted by SkyDiversMom

Just make sure they don't overdo it on him. A member of my RSD support group (17 yo girl) was diagnosed in her ankle when she was 13 and during some extremely "brutal" physical therapy, it began to spread up her leg. So be careful. Post surgery PT and RSD PT are two different things, make sure they do it right.

As for the mirror therapy, my therapist used this on me (and I'm 54!) and it really does work. My "good" foot would do the exercises while my "bad" foot did nothing. But watching my good foot in the mirror tricked my brain into believing my bad foot was working out - without experiencing pain. My bad foot actually felt tired even though it hadn't done anything.

Good luck to your son.

[Legin]

Re board, here we call it a wobble board. I used one alot when i ruptured my achilies and made one myself for at home came in handy when I ruptured the other one and when I tore my calf muscle.

[Littlepaw]

The BAPS Board is like a wobble board on steroids. Having the dome size and position where it is placed changeable makes the board work things in different ways. I could really feel it when the therapist changed the position. I bought a wobble board on Amazon but couldn't replicate the exercises nearly so well. BAPS run $400-700. A wobble will do in a pinch or to use at home but BAPS is great if the clinic has one.

On mirror therapy, if you have a mirrored closet door he can sit on the floor with legs extended and the injured one behind the door or just prop a full size mirror, like a cheapy lightweight one for your closet door on some chairs. I used a long one so I could visualize the entire leg not just the foot. Sitting is better so that the toes can spread, flex, ankles circle etc. on the non-injured leg. standing might be a little awkward!

Littlepaw