Dear Oliver's mom -
As the father of two boys (16 and 12) I cannot begin to imagine how hard this must be on you. Challenging enough to be an adult like myself who simply has to accept it in his own life. In my opinion, the parents of children with RSD/CRPS have the hardest job of all: taking in all of this terrifying information and navigating what must seem like barely charted waters, while at the same time serving as a source of strength and reassurance to you child. You, all of you, are the unsung heroes of this story.
MsL has given you a particularly good reference, with her Klinc in Schleswig Germany. I would follow up with her as soon as possible. (To send a private message, you must be logged in; perhaps the easiest way to do it is to simply left-click on the author's name - in blue - the left side of the post, which opens a drop-down menu that includes "Send a private message to ______.")
There are many myths and assumptions regarding RSD/CRPS in children. An excellent source of information is the webpage of the Reflex Sympathetic Dystrophy Association of America (RSDSA)
http://www.rsds.org/index2.html and in particular the "Children" section of its Medical Articles Archive page, which you can open here:
http://www.rsds.org/2/library/articl....html#Children
Going through those article tonight, I was amazed by one published by researchers at the Karolinska University Hospital in Stockholm, which it was reported, in study/case-report of seven adolescent girls with severe RSD, that 5 were actually cured by the implantation of spinal cord stimulators, and the other two, while not cured had a "substantial" improvement in pain,
all of these observations having been made 4 - 6 years after the initiation of treatment. Compared to the record in adults, this is an outstanding result! The article is "Spinal cord stimulation in adolescents with complex regional pain syndrome type I (CRPS-I)," Olsson GL, Meyerson BA, Linderoth B,
Euro J. Pain 2008;12:53-59, which can be directly opened through the RSDSA website at
http://www.rsds.org/2/library/articl..._Linderoth.pdf While noting that this was a small "uncontrolled" study, the authors state the miraculous, almost in passing:
Many studies have demonstrated that in adults, SCS may effectively relieve CRPS-I though there is only one single randomised controlled trial (Kemler et al., 2004; reviews, see Grabow et al., 2003; Turner et al., 2004; Taylor et al., 2006). No curative effect of SCS has been reported. To the best of our knowledge, the application of SCS for this condition in children and adolescents has not been previously reported.
So that may be an option to consider, hopefully when you meet with the doctors at the Klinc in Schleswig. And if not there, then perhaps the Karolinska University Hospital [Pain Treatment Unit, Astrid Lindgren Children's Hospital, 17176, Stockholm, Sweden].
Good luck. And please come to us with any questions and let us know how your son is doing.
Mike