(originally written & published on August 20, 2013)

If you’ve been reading my Autism Daddy Facebook page today you’ll know that my son Kyle had VNS Surgery today for his seizures / epilepsy. If you don’t know what VNS Surgery is, read this.

It’s 10:18pm and I’m writing this on my iPhone in the hospital while the king is sleeping peacefully next to me.

Wifey is sleeping on the couch behind me. We are taking shifts staying up to watch Kyle to make sure he doesn’t try to pull at the bandages while sleeping or have a seizure in his sleep.

So how did we end up deciding to do the VNS Surgery?

Well autism has taken a major back seat to epilepsy the past few months in the ol’ AD household and we’ve been doing a lot of med tweaking and dealing with some side effects, mainly major sleepiness and some zombie like behavior when awake.

And even with all these meds in his system he was still having seizures daily. Not scary looking tonic clonic seizures, mostly small silent seizures or seizures where he gets this cute smile on his face and kinda zones out for 10 seconds. And sometimes in his sleep we’d see bigger “complex partial” seizures.

But the point is with all the meds he was on he still having seizures daily…most days enough to count on 2 hands.

So here’s the deal. Kyle has epilepsy. He has a type of epilepsy called Lennox Gasteau Syndrome which is a hard to treat with meds form of epilepsy. He’s on his 4th medication and is still having seizures.

And I live in the NYC Metro area and Kyle has a great neurologist and we recently saw a “Top Doctor” manhattan neurologist for a second opinion.

And both docs say that if after trying 3-4 different anti-seizure meds you’re still having “breakthrough” seizures and if you’re seizures aren’t under control, the odds of you finding a med that will work are slim to none. You have “refractory epilepsy”

Your options then are…

1) keep trying more meds anyway

2) Brain surgery (scary, scary stuff!)

3) Ketogenic diet

4) VNS Surgery.

And I know what you’re thinking and many have asked. “Have you tried the Ketogenic diet?” “Wouldn’t you try the diet before opting for surgery?”

And my answer is no, not for Kyle. If you’ve been reading my page for awhile you’ll know that Kyle had major eating issues. He stayed the same weight for almost 3 years and his diet was extremely limited. And we had to force him to eat every day and it was excruciating.

But since November 2012 he’s put on over 25 pounds, probably mostly due to a side effect of one of the antiseizure meds he’s on (depakote).

This is a side effect we welcomed with open arms! The king now has an appetite! He’s trying new foods! He looks the healthiest he’s looked in years!

To put him on the Ketogenic diet, which is one of the most restrictive diets out there (kinda like a much much stricter, modified Atkins diet) would be tough.

If my kid was verbal and understood why I was denying him all the foods he loved it would be extremely difficult. To deny my nonverbal autistic kid the foods he loves and he doesn’t grasp the reason why is (in my opinion) virtually impossible and kinda cruel.

So in the wife and my opinions, the diet is off the table. You may not agree with us, but we stand by that.

So the diet is off the table, brain surgery is scary shit so if we can avoid that for now we will.

And that leaves us with trying more meds or VNS surgery.

Now let me tell you that my wife was all gung ho to move forward with the VNS Surgery months ago. So much so, that when we had an appointment with a neurosurgeon in July she asked him to pencilled in a date for the surgery which was today Tues August 20th. Her reasoning for doing it then? We get our annual lake vacation in the week before which Kyle loves, and the surgery and recovery would all get done before school starts again in September.

I was a lot more apprehensive about the surgery. Why? Because of some of the comments & feedback I’ve gotten from some of y’all when I’ve written about it. And because I started googling it.

And I read about some possible side effects. And it is still SURGERY which is always scary.

And what if what’s the device is inplanted and turned on and working, what if he’s in pain or it feels weird and he can’t tell us.

And when I mentioned this to the wife she said, “who knows what he’s feeling now with the meds? maybe he’s in pain now? maybe he’s got a massive headache and can’t tell us?”

“and he’s sleeping his life away…”

And that’s the reason why we don’t want to try any other meds… He’s sleeping a lot.

The cocktail of meds he’s on now make him very sleepy. He’s been napping 60-90 minutes at school pretty much every day this summer. Then he’ll have a late afternoon nap, and he’ll still go to bed for the night around his normal time.

And the hope of the VNS Surgery, even if it is somewhat successful, is that we can get him off some of these meds…or at least down to a lower dose so he can get his life back…get back to his normal hyper stimmy autistic self.

I never thought I’d say that, but after seeing zombie boy this summer I’ll take stimmy autism Kyle back. The happy version, not the 2011 “summer of rage” version. 🙂

So all summer we’ve had that August 20th date hanging over our head. We had our vacation last week and had the surgery today and so far so good.

And that’s where we are at.

We leave the hospital tomorrow and he hopefully has a few days at home to recover and will be back to normal.

One thing to note is that the device is not “turned on” during the surgery. That happens 2 weeks later in the surgeons office. The reason for that is this way they can more easily tell if something is a complication from the surgery vs a complication from a setting on the device.

So 2 weeks from today they turn it on and then every 2 weeks they adjust the settings of the stimulation that is being sent and we monitor his seizure activity to see which setting is the most effective.

Then we start reducing meds and seeing if seizures come back…and tweak and adjust as needed.

So this is all gonna take awhile, but we are glad to have the ball rolling.

Thanks for all your thoughts and prayers and kind words on Facebook today and in the days leading up to the surgery.

That’s it. Over and out.

Now I’m waking up the wife so she can start her shift watching kyle and I can get some shut eye.

G’night all!



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Written by

Frank 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” :-).

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10 People Replies to “VNS SURGERY: HOW DID WE GET HERE?”

  1. Nice post with great details. I really appreciate your idea. Thanks for sharing.

    iPhone 5 App Development & iPad Application Developer

  2. Anonymous

    I am really glad surgery went well, and I fully support your decisions, not that you need my support. Seriously, I completely agree with you that it would be cruel to take away all of the foods Kyle loves when he's nonverbal.

  3. Glad the surgery went well and hope for the best possible outcome.

  4. Anonymous

    i really hope it works too, best wishes.

  5. Anonymous

    I have no words in saying how much i wish you the best. I live day by day having my 12 year old autistic son and the overall challenges, fears, and other issues i can not adequately reveal. I also understand the diet issue, as I would not deprive my son of food he really likes considering his eating issues. Best wishes for your king and your family.

  6. Coleen

    I really hope it works out for your guys!

  7. I don't see how anyone who has experienced autism and epilepsy could question your decision to go with VNS. We have both autism and seizures in our family although not in the same person. I can kind of imagine what that might be like though… wishing kyle a speedy recovery

  8. Cheryl

    I totally get the diet thing too. I'm almost fanatical about a healthy diet w no processed foods. I raise most of our food since we live on a farm. But for two years my grandson ate almost nothing but corn dogs when he was out here! Of course everyone said things like.. Just don't feed them to him.. He w eat when he gets hungry. Yeah right lol! Things that do work for nt kids just don't work for these kids. Gradually he's learned to accept other foods though still not many and still not very healthy ones. But we w take what we can get! My youngest son had seizures so I know how scary they can be. Fortunately he's been seizure and meds free for several years now. I hope they surgery gives you that too!

  9. Sharon

    I wish this were available when I had seizures. From about age 12 to 26. I took Phenobarbital and Tegretol. I suspect I was having seizures much earlier than age 12, but that's when my parents noticed. It was pretty disturbing to be sitting there having a conversation, and suddenly people are asking you if you are okay with no apparent time in between. Seizures steal time, and you don't even notice. The downside, was that so did the medicines. I didn't sleep like your son most of the time. But I had a lot of trouble understanding simple conversations and maintaining my train of thought long enough to spit it out. I couldn't remember a task from one second to the next. I would read the same thing over and over and it didn't make sense no matter what. My dad was constantly bothering my mother to get me tested – he thought I was mentally retarded. In a way, I suppose I was, but it was chemically induced. Everything took so much effort, and was so frustrating. Not just physical effort, but fierce mental effort too. It was exhausting. THIS is the 'zombie like' state he's experiencing. I wish I had been able to think well enough to express what this was doing to me. But it's hard to tell someone what's wrong when you can't even remember the words for it.

    When I got married and switched neurologists, he almost killed me. He kept going for a "therapeutic dose" of medicine, which is what shows on blood tests. And that was an overdose for me. I don't remember much of those years. My husband says many times he would come home to find me passed out on the floor. It took me 3 hours to balance a checkbook with 8 new checks written. I couldn't think, concentrate, or function. I would become unable to move my legs, and have extreme double vision. I couldn't even see the phone to call and ambulance, even if I could have gotten to it.

    I finally told that doc that I wouldn't take that dose anymore, and he said that he wouldn't be responsible for what happened then. Of course, he never HAD been responsible. I went back to the dosing my first neuro had me on, and no more overdose issues. After being self managed and stable for several years, a third neuro told me I had likely outgrown it, and to wean off the meds.

    It was not a good experience. I'll never get those years back, and the damage done from four years or so of overdosing can't be undone. I still have trouble finding words when I need them, and find speaking to be difficult at best.

    I think you definitely made the right decision, and wish I had this option back then. Oh, and the only pain seizures ever caused were the muscle pain after a prolonged grande mal. I'm told that's typical. Best of luck!

  10. Anonymous

    I fully understand not doing the diet thing. My son had such eating issues and dropped to much weight that he has now had a g tube for 2 years to supplement what he eats. When people ask if we have tried a diet to " fix" his autism….well firstly he had symptoms before he was really eating solids, and secondly I don't want a huge battle and food regression that I am sure a strict diet would mean. So I get it!