So my son is working through pt in the gym. He did great with pool therapy and they felt he was ready to move to the gym. He does about 5-6 minutes on the bike, leg kicks, stretches with bands, and maybe one or two other exercises that I can't remember right now. They also want him to do the treadmill for a few minutes, but he hasn't been able to manage that yet by the time he gets through the other exercises. He's pretty much done in from the pain at that point. I'm thinking about pulling him out of formal pt for now and just taking him to the local YMCA pool nearly every day (we already go a couple times a week when we can). We went today and he walked, swam and played for a good three hours. My gut instinct tells me this is way more beneficial than 45 minutes in the gym and then needing to recover for two days with minimal activity. The stabbing, shooting pain is gone now (YIPPEE!) but he's having a hard time describing his pain (other than "intense"). I don't know if it's all just muscle pain at this point (he has quite a bit of muscle atrophy in both legs) or if it's still "CRPS" pain. So I guess this rambling message is me looking for advice from those of you with more experience beating back this monster. Is it "safe" to pull him out of formal pt (temporarily) and just let him walk/play/swim in the pool as long as we can each day? (He made up his own exercise - jumping up with his "bad" foot while we play volleyball in the pool).

Also, I worry about how much time he spends with his foot elevated (usually with a heating pad on). I'm not sure if elevating it is great for the circulation issues of CRPS but it seems to relieve the pain. Any advice there?

We go back to the pain management doctor at Children's Hospital Wednesday. Hopefully, they can find a pain med for him that he can tolerate without side effects. We haven't found one yet. Low dose Naproxen apparently isn't available yet, at least not for kids. Bummer.

Thanks for all your support here.