“Dave! He’s having a seizure!”
I looked in the rear view mirror at one of the most horrifying sights of my life.
Just writing about it isn’t easy, recalling that nightmarish moment a few weeks ago when I saw Ben’s face, his arms, the violent muscle contractions, Karen’s panicked voice trying to console him…
I’m not going to try to describe it further because I don’t want to think about it more than I have to. You’ve probably seen one anyway, if not in person, then on a movie or TV screen.
What used to be called a grand mal is now a generalized tonic-clonic seizure. It is god-awful, terrifying, and infinitely worse when it is happening to someone you love, someone deeply vulnerable, someone you spend your life trying to protect from harm and pain and discomfort and fear and the various dangers of the world that he’ll never be able to fend off for himself.
It seemed like it lasted forever, but it was probably just a minute or two, within the typical range for something like this. Then came unconsciousness, gurgling breathing that sounded like he might choke, groggy disorientation, and sleepiness.
We’d been on I-90 driving back from Headlands Beach State Park northeast of Cleveland, a half hour from Ben’s home. Karen thought he’d seemed lethargic, though I hadn’t noticed that. She was in her usual spot, next to him in the back seat.
The moment it began, I grabbed my phone and barked “hospital” into it. It displayed a list, the closest being 12 minutes away. I focused on the road and getting us to the next exit. A few moments later, Karen said the same thing – she’d also told Google Maps “hospital” and got the same result
Tip: If you need an emergency room, don’t tell your freaking phone you need a hospital. Pulling up, we realized it was an urgent care facility.
I felt like my head was going to explode. I ran inside and told the receptionist what was going on. She said that the nearest ER was 15 minutes away and where to go.
Ben was starting to come to from his brief sleep. Though he wasn’t yet fully out of the ether, it was a relief to hear him say, “Go to McDonald’s.” Ben was returning to being Ben.
So a half hour after all this began, and the longest drive of our life, we pulled up to the ER.
Ben has had only one other seizure in his 25 years (at least that anyone is aware of), when he was twelve or 13, soon after moving to his first residential placement. (Epilepsy is on the autism smorgasbord of co-morbidites – it’s far more common in people like Ben than the general population.) It hit him while he was at a computer. We weren’t there for that one.
For some years before that, he’d been on Depakote, an anti-seizure med. He’d never actually had a seizure at that point but was put on it by a doc after an “abnormal EEG.”
Soon after moving to that first placement in Oconomowoc, Wisconsin, a blood test suggested that the Depakote treatment was having an impact on his liver, and he was weaned off. Then came the seizure.
For the dozen years since, he’s been on Tegretol, another anti-seizure med.
So into the wheelchair and through the ER doors he went, protesting being anywhere but McDonald’s.
Ben and emergency rooms are a match made in Hades.
Emergency rooms = waiting. And waiting. And waiting. Ben HATES waiting. “Wait” in fact is a trigger word for him – we avoid saying it at all costs.
And “routine” examinations are anything but. Getting his blood pressure is a virtuoso act typically resulting in failure. A stethoscope on the chest, fine, but Ben has no idea what taking a deep breath means. And whatever you’re listening for, it better be quick.
My attempt to help with the blood pressure reading by holding his arm brought me a bloody nail-gouge. No biggie — because it was my arm. Our big concern is always other peoples’ flesh and blood and bones.
Ben’s loud agitation was now drawing attention.
The doc suggested Ativan to calm him down through sedation so he could examine Ben. I told him a double dose would be necessary, that one dose wouldn’t do squat, but sure, go ahead, what the heck.
We waited for the Ativan to be administered. And waited. Karen popped her head out of the curtain and saw the nurse whom we thought was arranging the dose. She was arranging for her lunch.
Twenty minutes after he finally got the shot, nothing had changed.
Parents of autistic people know what we’re talking about. You might be the doctor, but we’re the experts. Listen to us.
A second full dose was injected. Between that and a constant wheelchair ride around the ER (not something staff loved but it was better than the alternative), Ben was still loud but somewhat under control – and getting hungrier.
The doc actually, and thankfully, made an exception to protocol (figuring, correctly, there wouldn’t be any surgery) and let me run across the street and get Ben his McDonald’s. The five minutes it took for him to devour his lunch was our momentary respite.
Back to rolling Ben around the ER, I passed the tech we’d seen earlier.
“Hi again. Oh, and look.”
Ben had vigorously “removed” the IV, the wrapping was unwrapped, and Ben’s arm had been cleaned up by a nurse.
“Oh, wow,” he said.
It didn’t matter – the IV wasn’t needed anyway.
Yep, once again, even for a professional staff, Ben was a one-man Autism Awareness Squad.
The fact is, as horrid as they are, most epileptic seizures, in and of themselves, are not generally considered harmful. At least not directly. The biggest concerns are aspirating (basically, drowning in your own fluids, aka choking to death), or falling over and hitting your head. John Travolta’s 16-year-old son died from smacking his head during a seizure.
Many of those dealing with autism have dealt with seizures like this, some more often than others. I suppose it becomes, if not routine, less traumatic and more task-oriented, focusing on getting through it safely. But that sure wasn’t how it felt to us.
After a few seemingly endless hours and a blood draw for tests, we were done. They told us to follow up with a neurologist within a couple of days, which resulted in a dosage adjustment for the Tegretol, but nothing more. We were told to keep close watch for the first 24 hours after the seizure, the time he was most likely to have another one. He didn’t. And hasn’t.
So, we have a new layer of worry to add to everything else that comes with severe autism. Ben seems no worse for wear, but we have absolutely no idea what this has been like for him. We’ve read everything about it, but we don’t really know what this will mean for him going forward.
We are, yet again, thankful (to use an inadequate word) that he is where he is, with skilled, attentive and compassionate staff in a good environment. In that regard, as I’ve said many times, for an unlucky guy, Ben’s a lucky guy.
And Karen and I have a new layer of PTSD to slap on the rest.
Autism sucks.
Ben and Karen at Headlands Beach State Park, 30 minutes pre-seizure