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Autism & Epilepsy Brain Surgery

A MyEpilepsyTeam Member asked a question 💭
Derby, UK

Hi everyone, an important and kind of urgent question for you here please.

I have a good friend who comes to mine and my friends Epilepsy Support group. He has asked me to reach out to see if anyone has experience with Autism and brain surgery for Epilepsy. He has a teenage son with Epilepsy who also has severe Autism. They're looking into surgery, but my friend and his wide do not know how it will go with him being so severely autistic, he can't even cope having blood taken, or cannulas. He… read more

August 27, 2018 (edited)
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A MyEpilepsyTeam Member

My cousin and my friends. Kid , bot have Autism. Neither one are patient and don’t do well with Dr.’s.

From my experience . Before my brain surgery I had to do many pre tests. I had to do Neuro Psych Test ( IQ and memory test ). I also had to a EEG , And a MRI. I don’t know how well , he’ll be able to handle laying in a tight cramp space. Plus it makes strange noises, during the procedure. Then there was what’s called the WADA Test . They had tube like device and it sprayed something to one sphere of the brain and temporarily freezes it ( one sphere at at time ) . They were testing where the speech, language and memory center are located.

Then when the time came to my Appt at the Hospital , they knocked me out and opened my skull, where they placed the GRID electrodes and placed it where seizures were active. They then stapled the skull peace And I was brought back up to the Seizure Unit . They then hooked the EEG electrodes to me and connected the GRID to the EEG .

They slowly reduce my meds everyday. They want a good ( big ) Seizure , where they can get the seizures mapped out in my brain. It took about a week when they got the big seizure out of me. As soon as that was over a specialist came to test the GRID on me, and then I went in for the the brain surgery.

Like you asked before, will he make through this ? It maybe a big challenge.

August 28, 2018 (edited)
A MyEpilepsyTeam Member

i didnt have autism but i had a severe form of seizures. i have complex partial and used to have seizures every hour. i also work at a day care center and got an autistic kid. i found out that complex partials and autistic people is no different. the autism is my B phase of a seizures (where your brain is there but your body isnt). its like i am a puppet and someone is pulling the strings while getting a B seizure.
i know this is my take of seizures and autism. i do not know the link but i thing i know base of my seizures and the kids autism thing.

August 28, 2018

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