Question:

Rett syndrome?

by Guest60488  |  earlier

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Hi all>

Im doing some research on the genetic disorder Rett Syndrome (RS) & I am looking for some first hand accounts of the early stages

Ive frequented IRSF & MANY other rett syndrome pages but I am really looking for some information from people who have dealt with it on a hands on basis>

My biggest area of interest/curiosity is about the first "signs"

what were your first clues that something wasnt right

was it drawn out or did it just seem to happen overnight

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  1. I have only dealt with a child that was in Stage III.  I was a special education worker in a middle school a few years ago.   We had one case of Rett in our school.  I worked with the child very closely for a year and then was reassigned to other duties.  I stilled worked with her, but a much small amount for the other 3 years she was with us.  I don't know how much I can help.  However, if you have some specific questions you can contact me and I would try to help.

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