Dec 18, 2012 2 Share

The Wild Card


Medical history form with pen checking off "Epilepsy."
iStockphoto

“Mickey’s had a seizure.”

Heart stopping words. It doesn’t matter how many times we’ve gotten that call; I never get used to it.

It takes half an hour to reach him at school. He is tired but lucid. “My head hurts,” he tells us, subdued. His normally bright blue eyes are dull and shadowed. I feel his forehead; no fever. He can’t tell me much about the episode; he doesn’t even seem to remember where it happened. That’s not unusual, though. The doctor calls it retrograde amnesia.

Seizures leave him so profoundly disoriented that he will literally walk into oncoming traffic. We are always on high alert, because we never know when, where, or how they will strike. He’s had them showering. Shaving. Crossing a street. It’s like living with the threat of terrorism. Seizures are random. Sudden. Unpredictable.

Epilepsy, like autism, is a spectrum disorder. Anti-seizure meds eliminate seizures in about two-thirds of patients. More difficult-to-control cases sometimes—sometimes—respond to combinations of two or more medications.

My son takes three.

When both my children were infants, I checked them throughout the night to reassure myself they were still breathing. Mickey is 20 years old, and I am still checking. Each year, 50,000 people die as the result of a seizure; for people with autism, it is the leading cause of death. It’s called SUDEP: Sudden Unexplained Death in Epilepsy. Approximately 30 percent of people with ASD have seizures; by comparison, epilepsy affects 1 percent of the general population.

For centuries people believed that someone with seizures was possessed by devils. We know better now, but why does it feel as if treatment is still in the Dark Ages? We see terrible side effects from medications that at best achieve partial control of his seizures. Cognitive slowing. Mood shifts. Agitation. Exhaustion. We worry, every day, every hour, about all the things that can trigger seizures. Summer heat; missed meals; drinking too little water; drinking too much water; flashing lights; 3-D movies; anxiety. Even joyful anticipation. Mickey has had seizures going to a Chanukah party; eating dessert at the Thanksgiving table; visiting the science museum with his classmates; watching the Super Bowl with his cousins.

Every time he has a seizure, friends and family ask, “Was it a bad one?” Sometimes I feel like retorting, “I’ve yet to see a good one.” I know they mean well; they are asking, Did he fall to the floor? Lose consciousness? Convulse? I am at a loss how to answer. When it is your child, every seizure is bad. He is literally seized—snatched up in an electrical storm that sucks the air out of him before it spits him out, disoriented and spent. Doctors have told us, “A seizure is like getting kicked in the head.” How many kicks can a child sustain before there is permanent damage?

We bring him home; he sleeps deeply for four hours. When he finally wakes up, his first words are, “No school tomorrow.”

“Let’s see how you are in the morning,” I tell him.

“Not tomorrow. The next day,” he insists.

“How do you feel?” I ask.

“Nervous.”  

I know how terrified I am each time he has a seizure; how much worse it must be for him. What is it like, to wake up lying on a couch or floor, your body sore, your head aching, with no memory of what has caused you to land there, nothing but the ominous sense that something bad has happened? Unable to recognize familiar people around you. Unable to form words. Struggling to speak, only to see uncomprehending faces. No wonder he’s reluctant to return to school. Could this be why he so often resists leaving home at all?

This wasn’t the column I sat down to write this morning. Today I intended to write a cheery, holiday-themed post for December. I’ve been blindsided. Epilepsy has ridden roughshod over my son again. It’s the wild card in the autism diagnosis. One I wish fervently we’d never been dealt.



Comment Options

Anonymous

We are getting R checked out

We are getting R checked out again to see if he needs an adjustment with his meds.  He started having seizures with the onset of puberty.  It is very scary and I can relate to that feeling of unease and worry.  Take Care.  D

Anonymous

So sorry for your pain

So sorry for your pain, most appreciative for your eloquence.  I wish there was a treatment that could bring his seizures to an end.  Hope Mickey is feeling better soon and it's a long time till the next episode.