(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.
If you're gonna shop Amazon anyway, can I ask that you enter Amazon by using the link above? This way I can make a little money. This blogging thing has been awesome & life changing for me... but I must admit that it's taking up a lot more time than I ever thought... so if I can make a few bucks it'll make it easier for me to justify....Love you all! Thanks!!