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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!
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| on the neck where the wire is wrapped around the vagus nerve |
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| on his left chest/ under arm where the small device was implanted… |
Here’s how it looks inside…
And here is exactly what was implanted…
The VNS device was turned on last Tuesday September 3rd, and so far we’ve seen no reduction in his seizure activity…but he is at a very low “current”
It’s so low right now that I can’t tell when it’s going off at all. It sends a 30 second current to his vagus nerve every 5 minutes…and I thought in the very beginning that I could tell when Kyle’s was going off, but right now I can’t. And when I have a hunch that it is going off I’ve lightly touched his neck and I feel nothing.
Again, I’ve asked and been told that this is all normal/typical at such a low current.
They will increase his current about every 2 weeks at the neurologists office.
So Kyle is still having some seizures…nothing too scary, but we have tried the magnet a few times and noticed nothing with that either.
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| VNS Magnet |
They give you 2 powerful magnets and if you see a seizure coming on, or in the middle of a seizure you swipe the magnet in front of his chest where the device is implanted for a few seconds and it sends an immediate & stronger current on demand to hopefully stop the seizure in its tracks.
The 2-3 times we’ve tried it, again we couldn’t really tell if it worked because the seizures were pretty short & mild, but again Kyle had no reaction to a nice JOLT to his neck. I’m told at higher currents this will be more obvious…
So we are taking a wait & see attitude with the VNS device. As usual, no quick miracles here. So family members stop asking looking for a miracle!! I tried to curb their expectations, but everyone wants it to work so badly they are SHOCKED when you don’t have good news to share…
So, as I said we are taking a wait & see attitude with the VNS device. But unfortunately, we can’t take a wait & see attitude with his anti-seizure meds. Normally you wouldn’t start tweaking meds until being on the VNS sevice for MONTHS so you could be certain if the device is helping…but we gotta get Kyle off or down on one of his anti-seizure meds ASAP.
I wrote about this last week on my Autism Daddy Facebook Page. I cut & pasted an email to Kyle’s neurologist where I wrote…
“…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….”
Regardless of what the neurologist said the wife & I decided that we are slowly weaning him off of this med called Banzel / Rufinamide. We are convinced that this is the one that’s causing all the problems. The other seizure meds he is on are depakote & onfi. However, we started him Banzel back in July when he was having a lot of bigger (“complex partial”) seizures, many in his sleep…and they are scary looking and this med Banzel did reduce them significantly, but they made him to a very sleepy/ lethargic boy.
I just reread my post from back in May called “Autism Better, Epilepsy Worse? An update about my son” and read how great he was doing, and the progress he was making, and all that was before the med Banzel came into play…
So now I’m kicking myself for starting him on that med in the first place…but those complex partial seizures in his sleep are SO SCARY & FREAKY looking… his eyes roll back and he twitches, and sometimes looks like he has shortness of breath…and this med Banzel got rid of those, but left us with zombie boy…
But we are weaning him off of it…as I stated to the dr, we will take more seizures to have our happy, awake, stimmy autistic kid back…
I’ve written it tons of times on my blog & FB page and I’ll say it again…autism parents, heck special needs parents need to make lots of tough decisions & make crazy & bizarre tradeoffs all the time.
So this is the trade-off that we are currently trying to make…possibly bring back more seizures to bring back our severe, hyper, full of energy autistic kid…
And then hopefully at some point the VNS Device will hit the right settings & current, and start reducing these seizures…but again, I’m not expecting any miracles, and I know this all might take a while…
And I’m a realist…
I’ve learned from years of living this autism lifestyle to expect nothing and you’ll be thrilled when something works, you know what I mean…and this epilepsy stuff is the same way…
Anyway, that more that I planned on writing. I was just gonna post the pics and be done, and I ended up writing all this crap… so I’m gonna end it there…
Over and out…
THE END…
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.