This is Sam. He’s my son. His epilepsy caused him to have up to 100 seizures a day. After seven years we were out of options. Our last hope: an untested, unproven treatment. The only problem? It was illegal.
HE HOSPITAL PHARMACIST slid three bottles of pills across the counter, gave my wife a form to sign, and reminded her that this was not the corner drugstore. The pharmacy knew how many pills had been dispensed, he said; it would know how many had been consumed; and it would expect her to return the unused pills before she left the country. The pharmacist made it clear that he was not only in touch with our doctor but with the company supplying the medication. They would know if she broke the rules.
Evelyn said she understood and slipped the brown glass bottles into her purse. She and our 11-year-old son, Sam, were jet-lagged. They’d flown from San Francisco to London the previous day, December 19, 2012. Now, 30 hours later, it was just after 7 pm. They’d been at the Great Ormond Street Hospital for Children since midmorning. Sam had been through a brain-wave scan, a blood test, and a doctor examination. Some gel left in his hair from the brain scan was making him grumpy.
Evelyn was terrified. They’d come 5,350 miles to get these pills, medicine we hoped might finally quiet Sam’s unremitting seizures. He was to take a 50-milligram pill once a day for two days, increasing the dose to maybe three pills twice a day. Evelyn was to keep a log of his symptoms during their two-week stay. They would need to revisit the hospital two more times before they returned to San Francisco on January 3, 2013. That meant two more rounds of brain scans, blood tests, and doctors’ appointments.
Sam Vogelstein has had epilepsy since he was 4 and a half. He turned 14 in May. PHOTO BY: ELINOR CARUCCI
We were confident the medicine wouldn’t kill Sam or hurt him irreversibly, but the prospect still made us nervous. The pills contained a pharmaceutical derivative of cannabis. People have been smoking cannabis medicinally for thousands of years. Deaths are rare. But Sam would get a specific compound made in a lab. The compound, cannabidiol, known as CBD, is not an intoxicant. (Tetrahydrocannabinol, or THC, is the stuff in pot that makes you high.) Nevertheless, US drug laws made it nearly impossible to get CBD at this purity and concentration in the States.
It had taken four months of phone calls, emails, and meetings with doctors and pharmaceutical company executives on two continents to get permission to try this drug. Sam wasn’t joining an ongoing clinical trial. The company made the pills just for him. It believed CBD was safe based on animal studies. It also said it knew of about 100 adults who had tried pure CBD like this over the past 35 years. As a percentage of body weight, Sam’s dose would approach twice what anyone else on record had tried for epilepsy. Would it make him vomit or become dizzy, or give him a rash or cause some other unpleasant event? We didn’t know. We’d volunteered our son to be a lab rat.
Then there was a bigger question: Would the medicine work? No one knew. The reason Evelyn, Sam, and others in my family—including Sam’s twin sister, Beatrice, and Evelyn’s sister, Devorah—traveled to London during Sam’s winter vacation was that two dozen other treatments we’d tried had all failed. (I stayed behind in San Francisco, scrambling to meet an end-of-year book deadline.)
The one thing we were certain about: This was not going to be a bargain. We’d already spent tens of thousands of dollars on consultants to help Sam’s doctors set up the visit, and we were still at the starting line. The best-case scenario was that the medicine would work and eventually we’d be allowed to import it into the US. We secretly hoped that this would encourage the company to make the drug easily and cheaply available to others. We also knew this was quixotic. Our previous experience with medications suggested the whole venture would end in failure. This much we knew: Importing an experimental cannabis-based drug into the US would involve more than giving the company my address and FedEx account number.
F YOU’RE THE parent of a healthy kid, it’s hard to imagine yourself doing what we did. Who spends tens of thousands of dollars on anything that’s not a house, a car, or college tuition? Who lets their child be the first or even one of the first to try any medication? But Sam was not a healthy kid. He has had epilepsy since he was 4 and a half. We’d tried every possible drug—nearly two dozen medications—plus autoimmune therapy using intravenous immunoglobulin and a high-fat medical diet. (I wrote about our two-year diet experiment in The New York Times Magazine.) Little worked, and the treatments that showed some results didn’t work for very long or had worrisome side effects.
Sam doesn’t have grand mal seizures, the type most people imagine when they think of epilepsy: collapsing and twitching on the ground. Instead, he partially loses consciousness for five-to-20-second bursts. It’s a hard-to-treat variant of so-called absence epilepsy. The seizures themselves are more benign than grand mal, and they don’t leave him exhausted. But they are also much more frequent. When Sam’s seizures are uncontrolled he can have between 10 and 20 episodes an hour. That’s one every three to six minutes and sometimes more than 100 a day.
When Sam’s seizures are uncontrolled he can have one every three to six minutes and sometimes more than 100 a day.
To me, watching Sam have a seizure looks like a movie that’s been paused and restarted. He stops and stares vacantly. His jaw slackens. And his head and torso lean forward slightly, bobbing rhythmically. Then it’s over, and he resumes life as if nothing happened. If he stopped walking, he’ll start again. If he was packing his backpack for school, he’ll continue. Though Sam says that he is sometimes aware when he has a seizure, typically his only clue is that when he comes to, everything around him has shifted slightly.
When they are frequent—which has been often—it’s hard for Sam to have a conversation, let alone learn anything in school. Sports? Not possible. As a little kid, Sam couldn’t even cry without being interrupted: He’d skin a knee, cry for 15 seconds, have a 15-second seizure, and then continue crying. Once, after watching a movie with me, he complained about the DVD being scratched. It wasn’t. It just seemed that way because he’d had so many seizures.
And while Sam got little help from the many antiepileptic medications that we tried, he endured plenty of side effects. One drug gave him hand tremors. Another made him violent. A third gave him hives. A fourth made him such a zombie that he drooled, while a fifth made him see bugs crawling out of holes in his skin. Twice his seizures were bad enough that we had to hospitalize him. He’d seen six neurologists at four hospitals in three states. I’ve seen him seize tens of thousands of times. You’d think I’d be used to it, but I find each one haunting—as if some outside force has taken over his body, leaving me, the person who is supposed to protect him, powerless.
By 2012, when Sam was 11, the only thing that was keeping his seizures controlled enough for him to attend school was massive doses of corticosteroids. If you or anyone close to you has had cancer, bad asthma, or any kind of major inflammation, you know about these drugs, which are synthetic versions of the body’s own anti-inflammatory compounds. Taken for a week or two, they can be lifesavers. But taken for extended periods, they wreak havoc on the body.
By the time he reached London, Sam had been on a big dose of the corticosteroid prednisone off and on for a year. It made him gain 30 pounds. It made his face look like it had been pumped full of air—a side effect known as “moon face.” And it weakened his immune system. He was starting to get head and chest colds every month. Were he to stay on these drugs at these doses longer-term, he would face stunted growth, diabetes, cataracts, and high blood pressure—all before he was old enough to vote.
So the trip to the UK felt like a last resort: If these pills got his seizures under control, he’d have as good a chance as any healthy kid to grow up to be a happy, successful adult. If they didn’t, well, we were out of options. He might grow out of his seizures, but there were no other medications or treatments that our doctors knew to try. It seemed hard to imagine him ever living on his own.
Sam’s seizures are brief, lasting 20 seconds or so. But at times, he has had as many as 100 a day. ELINOR