Posted by Kelly I'm looking for info on nonsurgical treatment options for kids with scoliosis and severe mental retardation and/or behavior disorders. I volunteer with a support group for kids with WAGR syndrome - a rare genetic disorder. These kids often have significant cognitive impairment, and many also have serious behavior disorders (such as autism) Several of our kids have been diagnosed with scoliosis -- all have been told that surgery would ordinarily be recommended for them, *however* because of their retardation and/or behavior disorders, the surgery will not be done. No other treatment has been offered to these kids. Does this mean that they are doomed to progression/increased disability and increasing risk of complications? Surely there have been others who've dealt with this situation....but I can't find anything on the internet. Perhaps I'm not looking in the right places? I'd appreciate any info or direction anyone could suggest. Thank you very much,
on 12/30/2006, 1:54 pm
70.242.187.182
Hello,
Kelly Trout, RN, BSN
International WAGR Syndrome Association
http://www.wagr.org
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