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” :-).
9 People Replies to “VNS Surgery Scar Pictures & An Epilepsy Update…”
I do understand what you are going threw I really do I have 4 to 5 different types of epilepsy and generalized epilepsy and I have been on so many seizure medications that I just wanted to give up but then I saw a specialist and they changed all my medications and rediognost me I was on banzel and it is a good medication I am not telling you what you can or can't do I am nearly just suggesting that you don't start to slowly take your son off of his seizure medication unless the doctors Say or do otherwise because it could be really dangerous to mess around with any medications I understand that it is very fustratating but you should really give the vns and the medications time to work and ask the doctor to turn the vns up
My son was on Keppra, Diazapam, Banzel, Onfi, Lamictal, depakote all at once and he was a zombie….. just like you described your son…..awake then sleep…..awake then sleep….and so wobbly trying to walk while awake….. we have taken away most of those meds…..I believe the depakote caused him the most issues….. now he is just on Keppra and Lamictal and we meet the neurosurgeon this weekto discuss the vns
ikzelf ben een persoon met aangeboren epilepsie , op mijn elfde toen ik de pubertijd inging vielen de zware aanvallen uit . nu is het alweer een tijd actief (heb beide vormen van epilepsie waren aangeboren en na 5 jaar van gestrest worden door werkleider die rooster maakte weer geactiveerd , ben 20 jaar zonder geweest ) na heractivering van de midden en zware aanvallen er achter gekomen door een onderzoek dat ik onder de autisten val (pdd-nos+) terwijl ik eerst vanaf ik 12 jaar was dacht oke ik ben dus gek … ik moet dus eerst zorgen dat ik kan functioneren . toen de epilepschie eerst heractiveerde heb ik een lange tijd van 10 tot 18 zware aanvallen per 24 uur gehad ( extreem , de zwaarste somige zo een 6 minuten ) nu is het gelukig vermindert . ik heb nu tot midden klasse wakend en de zwaarste alleen nog 1 keer per 3 tot 5 weken waneer ik slaap
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A bunion or hallux valgus Surgery is a swelling on the inner border of the foot affecting the base of big toe.
I'm so sorry the VNS device has not given Kyle an improvement in seizures yet. I hope it will work soon when you get the current increased. I totally understand you wanting to wen him off the medication that is making him so tired/sleepy. Really hope it works.
Praying this works for Kyle.
Hey AD my sons Triliptal (spelling) made him so tired at first..but it worked…we stayed with it but it took about 6 months for him to return to normal…he had a issue with his puberty hitting which took about 4 months and a med for that..now he is back to himself on seizure med and aggression med..but doing great..it took time.
Don't kick yourself for ANYTHING…you are only trying to help your son that you love so much! I know I would do the same thing.