Originally Posted by Millerprof

I'm sorry that it took her so long to get a diagnosis. Unfortunately I don't think a lot of doctor's recognize what it is and it can go untreated for too long. There seems to be a myth I think also that some doctor's believe that children don't get RSD, or that it's so rare in kids that it couldn't possibly be RSD. When I first questioned my daughter's orthopeadist about her symptoms he said "Well, that's really rare in children." I said I don't care if it's rare in kids; it's not a typical response to an injury in anyone, but I had RSD--I KNOW what it is. Even the first pain doctor I took my daughter to did not want to diagnose it as RSD. His advice was to cast it and stay off it for another month. WORST advice to give for RSD and I didn't do it. So I found a program that specializes in children's pain; they got her in within 2 days after hearing the diagnosis was probably RSD because they recognized the importance of early treatment (otherwise it would have been a 3-4 month wait to get into the program). They DID diagnose it and got her started in treatment right away (about 6-7 weeks post-injury). So they say the prognosis for her is really good; that it typically takes about as long as it took to FIND treatment for the symptoms to subside. As we know, the longer it takes to get treatment the more chronic it can become, and the more it can spread. But I truely believe that if I didn't know what RSD was having had it myself, it would still be undiagnosed in my daughter. They DO think it has a genetic component--a predisposition for nerve hypersensitivity, so unfortunately I passed this on to my daughter . I'm glad your daughter is getting ketamine treatment and feeling some relief. I hope it gets better for her. You asked what I did to get mine to go away. First--I was diagnosed within about 6 weeks following my surgery; it was very clear what I had and I was fortunate that the surgeon recognized it right away. I had the discoloration, swelling, sweating, coldness, rapid bone loss in the foot, extreme pain where I didn't want the doctor to even remove my stiches. It throbbed. This turned into sort of a deep, cold bone pain and severe muscle pain that moved up my leg. I never had much of the burning pain that a lot of people get--once in awhile I would get it but my pain seemed to be "deeper"--in my muscles and in my bones. My nerves felt like when you rip a band-aid off your skin really fast. My ankle was almost frozen in place--I could barely move it at all (even though my surgery was more toward my toe). I couldn't let my daughter sit on my lap; it hurt too much. I had aggressive treatments right from the beginning. I had several lumbar sympathetic blocks and an ankle block (about 7-8 blocks total over the course of several months). I was on Gabapentin for quite awhile (as well as a host of other meds which I didn't really find effective). I did a lot of PT, including aqua therapy (which I think was one of the most important things I did). I had a TENS unit. I tried STS therapy for 2 weeks in the clinic but then my insurance wouldn't pay for the equipment. I did biofeedback and mirror therapy. I would try to focus on parts of my body that DIDN'T hurt. I did desensitization therapies. I did some laser therapy and ultrasound. I feel like I tried almost everything that I thought could possibly be helpful. I finally got the hardware removed from my foot and then went to hyperbaric oxygen therapy for almost 40 sessions. It still lingered for a bit, but I still kept exercising and doing desensitization, and eventually it slowly went away. But it did take about 1 1/2 years for me. I don't have pain anymore, but I do have some nerve "strangeness" that reminds me what lies beneath the surface, ready to be triggered by something else if I'm not careful. I can't describe it--it's NOT pain; I think maybe it's more "body memory." I'm praying that your daughter can make a full recovery. Are they planning on doing any PT with her now that the pain is a little better?