An update on Kyle’s at home EEG test…
May 30, 2013
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Now Reading: An update on Kyle’s at home EEG test…
May 30, 2013
Wed 8:50pm — Just got home from the EEG place. Kyle did awesome! The quadruple whammy of 2 Benadryl, swaddling him up in a sheet like a mummy, daddy sitting on his legs, and mommy playing Sesame videos on her phone 10 inches from his face throughout the process did the trick.
He is now asleep in his room and I’m sitting in a rocking chair on the side of his bed.
The wife and I will be taking shifts tonight…watching him as he sleeps (a) to make sure he doesn’t pull the EEG wires off and (b) if we see any possible seizure activity there’s a button we’re supposed to press.
Did I mention it’s a video EEG so there’s a camera pack that we take from room to room so they can see exactly what the seizures look like and compare it against what they see on the EEG report.
The wife asked the technican, “Does the camera have audio?”
It does!! So we have to watch our potty mouths and not complain about any doctors or they’ll have us on record! 🙂
Anyway, tonight’s the easy part. It’ll be easy when he’s sleeping.
Tomorrow when he’s awake and wanting to pull the leads off will be a different story.
But we’ve called in reinforcements. I’m taking the day off from work…and my sis-in-law & niece will come over in the late morning to give us a break and try to distract Kyle as much as possible.
We’ll get thru this fine. In the grand scheme of things this is nothing. We’ve been thru a lot worse than this with his majesty.
The end game is to get the results and hopefully find exactly the right med to put him on so he’s almost completely seizure free.
And as I’ve mentioned before, if we don’t find that med, we’ll probably be looking at VNS surgery.
But I’m getting ahead of myself. Wifey just came in to take a shift so I can scarf down some dinner and watch some of the Yankee game.
Talk to y’all later…
For more of a back story of why he’s getting this EEG & what the VNS surgery is all about read the blog post from earlier this month called “Autism Better, Epilepsy Worse? An update about my son”
Written byFrank Campagna
I’m a 48 year old neurotypical dad with a 14 year old son with severe, non-verbal autism & epilepsy. I created this blog to rant about autism & epilepsy while celebrating my son who I affectionately call “the king” :-).