Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 02-18-2016, 09:13 PM #1
swimtime swimtime is offline
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Join Date: Feb 2015
Posts: 123
8 yr Member
swimtime swimtime is offline
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Join Date: Feb 2015
Posts: 123
8 yr Member
Default Struggling with the lack of options for treating CRPS in a teen. :(

I'm trying to find a doctor closer to our home. Having his foot down for the 40 minute (one way) car trip, plus time spent at the appointment, causes more problems than it solves.

I literally spent hours today searching for a doctor closer to our area. Either they don't treat CRPS, or they only treat adults with CRPS. Even the pain management doctors who do treat teens, are very limited in what they have been willing to offer. Nerve blocks haven't been very effective, they won't consider ketamine at all, yet he's lost most of his mobility. I need a brick to beat my head against. I'm very reluctant to take him back to the local pt place he went to before, because they kept saying things like, he's lazy, he pretends to be in more pain than he actually is, etc. The reality is that they were ignorant of CRPS. I just don't know what else to do at this point.

It is unbearable to watch your once active, healthy teen, be in so much pain that he is unable to walk anymore. I worry so much for his future. He has had a few minor gains over the last month or so, and he keeps trying, but I would feel more hopeful if he could at least walk. He does walk in the pool, but on land he can't do it.

Sorry for the rant, just feeling lost lately.
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