VNS Surgery Scar Pictures & An Epilepsy Update…
September 9, 2013
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Now Reading: VNS Surgery Scar Pictures & An Epilepsy Update…
September 9, 2013
This Autism Daddy blog is turning into more of an Epilepsy Daddy blog lately… Oh well, that’s our lives right now. I hope y’all still find this interesting.
Anyway, I took these pics on Saturday, September 7th. These are Kyle’s scars from the VNS Surgery he had on Tuesday August 20… It’s funny, there’s more marks from the tape then there is from the scars!
|on the neck where the wire is wrapped around the vagus nerve|
|on his left chest/ under arm where the small device was implanted…|
“…more importantly or more troubling to us is the fact that he is still sleeping all the time due to all his anti-epileptic meds.
It’s really quite pathetic.
He wakes up, eats breakfast, takes a mid morning nap, gets up for a few hours, eats some lunch, another nap, etc, etc. and still goes to sleep at his normal time.
And when he is awake his energy level is pretty low. He is quite lethargic. He has points during the day when he is himself, but they are few and far between.
He doesn’t have his first full day of school til next Wednesday 9/11 but it’s gotten to the point where I can’t see him making it thru the whole school day without 1-2 naps.
Now I know we’re supposed to go up on the vns settings with the electrical “current” every 2 weeks or so.
But when is a safe / smart time to start decreasing the doses on some of his meds? For us the sooner the better.
As I mentioned in an email to you a few weeks back, maybe we are crazy or naive but i think we would take a few more seizures to have more of our awake, hyper, stimmy, happy autistic kid back…
I think VNS or no VNS we would be contacting you and would be anxious to start reducing meds ASAP and see what types of seizures (if any) return….”
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” :-).