My son Chris was a spirited three-year-old. Large for his age, he was blond, sturdy, and crazed with desire. He approached strangers to offer them comments or ask them questions. “That's a nice baby you've got there.” “Where did you get that truck?” “I'd sure like a ride in your boat.”
One night at 10 pm, my husband came into the family room carrying our son. Chris's head was thrown back as if he was sleeping.
“What is this?” my husband said.
Chris's left side was jerking rhythmically. His mouth twitched in time to the jerks. Drool poured from his lips. He stared as if enthralled by an invisible circus act.
I hesitated, froze, dithered, then said, “I think it's a seizure.”
The Medic One ambulance arrived within 10 or 15 minutes. The medic asked how long the seizure had been going on. I said about half an hour.
“That long?” he said, and hurriedly injected Valium. Chris stopped jerking, closed his eyes, and went limp in my arms, head flung back, wet mouth gaping open. He was wearing blue footy pajamas sprinkled with scarlet fire trucks.
An estimated 50 million people worldwide—between 1% and 2% of the population—have epilepsy, the disease of repeating seizures. There are more people with epilepsy than with multiple sclerosis, cerebral palsy, muscular dystrophy, and Parkinson's disease combined.
Each year, up to 50,000 Americans die from epilepsy or epilepsy-related causes. Kids with seizures can die as a result of falling, drowning, or other accidents; from status epilepticus; or from SUDEP—sudden unexplained death from epilepsy.
My son spent a couple of days in the hospital. We didn't learn until later that his first seizure was a case of status epilepticus, which traps you as if you're a bug in a bottle. In the worst cases, you have continuous seizures until you are drugged into a coma or you die.
We were afraid of pills, but we were more afraid of seizures, so we fed Chris pills. Every day he took lots of carbamazepine, the adverse effects of which can be fatal. By this standard, Chris's reactions were mild: dizziness and clumsiness. But we couldn't risk another episode of status epilepticus, and the doctors had warned us that once a brain knows how to have a seizure, it is more likely to have another one.
Despite the protective scrim of medication, Chris still suffered through a couple of dozen seizures between the ages of three and 11. The doctors said these breakthrough seizures could be caused by a virus, a change in his weight, fatigue, stress, dehydration, or nothing.
When Chris was 11, mercifully, he had his last seizure.
Most people with epilepsy are saved by pharmaceuticals, but 20% to 30% are not effectively treated by diet, drugs, nerve-stimulating implants, or even by radical brain surgery. Their cases are called “intractable.”
Like that of the 12-year-old boy who has dozens of seizures a day. His father wheels him to the sidelines of football games he can no longer participate in.
Or the 15-year-old boy whose seizures stop his heart. His mother keeps a crash cart in the closet.
Or the seven-month-old baby who has continuous seizures. In the video, a nurse is feeding him pureed carrots. Every few bites, he has a seizure. After two or three minutes of spasms, he cries miserably.
This goes on and on, all over the world.
In a 2007 New York Times article, Dr. Orrin Devinsky of New York University wrote that epilepsy carries “a lot worse stigma than a cancer, or an HIV [diagnosis] even.”
Seizures horrify. And so, for decades, epilepsy advocacy focused on mitigating the stigma—which is fine for most people with epilepsy, the ones like my son for whom pills work. But it's disastrous for people with intractable epilepsy. Epilepsy research gets less funding per patient than Alzheimer's, Parkinson's, or autism. Isn't it time we worked harder to increase it?
My family is lucky. My son Chris is 25 now, a handsome, charming, smart, graceful young man. He does not have seizures any longer.
But think of the sons and daughters who do.