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March 22, 2016

Over the last few years RSRT has heard from a number of parents who reported their child with Rett had an “awakening,” or significant improvement in their Rett symptoms after receiving either sedation for a procedure or other medications. These “awakenings” lasted a few days to a week and have involved increased alertness and vocalizations, reduced hand stereotypies and better hand use, attempts to communicate and more.

We strongly believe that astute parents have so much information that could help the research efforts, and we don’t want this information to fall through the cracks. Your insight could be very valuable to the scientific community.

Today we're asking any parent, grandparent or caregiver who believes their child had an improvement after being given a sedative (e.g., ketamine, sevoflurane, propofol, to name a few) or other medication to please either comment below or contact us and share the details of this "awakening".