Thursday, July 3, 2008


Ok we just got home from the NeurologistWe see Dr Abdelmoiti. He has a long history with Rett Syndrome and has studied with Dr Glaze at Baylor. He was also in the lab when the mecp2 was discovered.Abby had an eye rolling episode while we were there. He doesn’t think it is a seizure. She was sitting at the time. He wants us to start tracking the tremors, when she eye rolls, for how long and if she falls with them so he can get an idea of how often this is happening. he wants up to start putting a helmet on her-which I hate ay home so she doesnt hurt herself. She doesn’t mind the helmet at school but it seems to irritate her at home. He scheduled an EEG for her on the 25th.He said with Rett Sydrome the tremors and the eye rolling is just a part of it. Like the hand washing, hand mouthing, backwards stepping and breath holding. It’s something she can do and she gets a reaction so she likes it.He doesnt want to rule out seizures completely which is why we have to track and why the new EEG.He does want to get her in new AFO’s because of the leg turning.SO we feel alot better.He did confirm that she is still in stage 2 so new things will appear and dissapear still. We expected that. Thanks for checking in.

1 comment:

SeairaLaNae said...

I love that picture of you and Abby!