Grace for Rett » Grace's Life with Rett Syndrome

Video Telemetry (is not about reading minds)

This week Grace gets the prolonged EEG I’ve been requesting for a couple years. This is how is goes down: she hangs out in a hospital bed for a whole week (fun) with a camera fixed on her and wires on her head. So it not only records her brain activity, but also video of the episodes to give a more full picture of what these episodes really are.

It’s called video telemetry (not telepathy…no mind reading involved).

It’s not uncommon in Rett syndrome for there to be a misdiagnosis of seizures which are actually something else. With the risks of being on anticonvulsant meds for a lifetime (like kidney stones…ouch) we don’t want her on these meds needlessly on the off chance it’s not seizures. And if they are (I’m pretty sure they are), then I want to know exactly what kind they are and what’s happening in her brain when this happens. I believe that knowledge is power and I want us to have as full a picture of Grace as we can.

We’ve got our own room, movies, a cooler full of food and 4g connection. #sorted

Julie Ann Holley - April 21, 2015 - 11:56 am

So pleased they have listened to parents. In most cases we know what needs our children have and when something is wrong!. Praying that the correct diagnosis us given and you are all back in your “new” home! Luv

Robin Geer Troxell - April 21, 2015 - 3:54 pm

hope you get some answers!

[…] Video Telemetry (is not about reading minds) […]

Sarah Jane Smith - April 25, 2016 - 12:48 am

Praying that you all find out the truth about her seizures and healing bless her and sending loads of hugs Love Sarah Jane xxx

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