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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.

am’s situation is hardly unique. About 1 percent of the US population has epilepsy, and about a third of that 1 percent has epilepsy that can’t be curbed with medication. That’s nearly 3 million Americans with epilepsy and 1 million Americans with uncontrolled seizures. Epilepsy is more prevalent than Parkinson’s or multiple sclerosis. More than a dozen antiseizure drugs have come to market in the past 25 years. They’ve reduced the side effects associated with antiepileptics, but the new drugs haven’t proven much more effective at reducing seizures. The number of hard-to-treat cases of epilepsy like Sam’s hasn’t changed meaningfully in decades.
There are dozens of seizure disorders. Some cause patients to collapse like marionettes whose strings have been cut. Others cause a single limb to twitch. Big seizures can cause brain damage. And tens of thousands of people die every year from status epilepticus, a seizure that goes on for more than five minutes and typically requires a trip to the emergency room.
Think of a seizure as an overtaxed electrical grid. The human body is full of electricity that allows brain cells, nerves, and muscles to communicate in an orderly, controlled fashion. A seizure happens when this electricity spikes uncontrollably. As a result, parts of the brain’s circuitry temporarily shut down. You’d think medical science would be able to tell you why this happens and what to do about it, but with a few exceptions it can’t. Modern medicine can reattach fingers, replace a faulty heart, liver, or kidney, and regrow skin in a petri dish, but the brain’s abnormalities remain mostly mysterious and largely invisible.

Think of a seizure as an overtaxed electrical grid. When the electricity spikes uncontrollably, parts of the brain’s circuitry shut down.

Indeed, most epilepsy cases are like Sam’s, idiopathic, a fancy way of saying “no known cause.” A typical prognosis: If we can control the seizures with the first three meds, he’ll probably never have another one. If we can’t, the future is less certain. Beatrice developed absence epilepsy when she was older, in 2010. The first drug made the seizures disappear. She took it for two years. We have never seen another seizure.
There was nothing invisible or mysterious about Sam’s epilepsy in London, however. By the time he and Evelyn arrived, his seizure count was approaching its highest level ever. We had expected this. We’d reduced one of the drugs helping to control his condition five days before they left. If the drugs in London worked, we’d need convincing data to get permission to import them into the US. To get convincing data, we’d need to show a marked reduction in seizures.
It was not easy to watch. Two days before departure he had eight seizures. One day before departure he had 25. The day of departure he had 20, including 12 in the 88 minutes between 5:50 pm and 7:18 pm, immediately after the flight to London took off. By the end of the next day, when they picked up Sam’s pills at the Great Ormond Street Hospital pharmacy, his seizures had more than tripled to 68. Past experience told Evelyn that if the pills didn’t work fast, the following day would be a complete wipeout with more than 100 seizures.

he first time Evelyn and I talked about cannabis as a treatment for epilepsy was in early June 2011. The high-fat diet Sam had been on for two years had stopped working. There were no more conventional antiepileptic drugs to try. In our scramble to find solutions, Evelyn learned that a nurse-practitioner in one of our doctors’ offices was starting a cannabis collective—outside of work—to help some of the physician’s sickest kids. Other parents of epileptic kids we knew were joining. Besides having a medical degree, the nurse was an herbalist. She’d heard that cannabis—if made into oil-based tinctures, taken by the drop instead of smoked—could help people with intractable seizures.Evelyn liked the fact that the nurse sent her a 1981 paper from The Journal of Clinical Pharmacology on cannabinoids as potential antiepileptics. And she liked that the nurse assured her that the cannabis being used wouldn’t get anyone stoned. It would be high in CBD and low in THC.
Neither of us wanted to join the collective immediately. We had two other options for Sam we wanted to try first—corticosteroids and intravenous immunoglobulin. We also knew that if we were going to ditch Western medicine to treat Sam’s epilepsy, we’d have to do a lot more homework. Many people, often justifiably, hate drug companies. But one thing they are good at is making sure that every pill, drop, or spray of medicine they supply is exactly the same. Treating Sam’s epilepsy with cannabis would mean the reliability, consistency, and potency of his medicine was no longer assured.

Sam has seen six neurologists at four hospitals in three states. Photo by: Elinor Carucci

My first reaction to the idea of trying cannabis to treat Sam was that it sounded crazy. I’d smoked plenty of weed in college and in my twenties. I knew the plant could have real medicinal effects; medical cannabis was legal to buy in California with proper documentation. But rightly or wrongly, the idea of controlling Sam’s seizures with cannabis—he was 10 at the time—alarmed me. I associated pot with partying, not treating my son’s serious illness. I hated having the two thoughts side by side.
But the desperate can’t afford to be doctrinaire. And by the time another year had passed, we were desperate. Intravenous immunoglobulin hadn’t worked. And it was becoming increasingly less safe to control Sam’s seizures with high doses of corticosteroids. In May 2012 we wrote a $600 check to join the cannabis collective.
We knew to expect uncertainty. Plants as medicine are by their nature variable in potency. The nurse was still trying to figure out which strains worked best and the optimal way to turn those strains into tinctures. And while some parents were reporting good results, no one was seizure-free.
But over the previous year we had also learned that treating epilepsy with cannabis wasn’t crazy at all. A small but growing body of research suggested that CBD might be a powerful anticonvulsant. Evelyn took particular note of a 2010 paper in Seizure, the medical journal of the British Epilepsy Association, that she found through a Google search. With charts and tables sprinkled over eight double-columned pages, the authors said that extensive tests on rodents in their labs, along with previously published data, “point to CBD being of potential therapeutic use (alone or as an adjunct) in the treatment of epilepsies.”

And then, remarkably, the first tincture we tried from the collective seemed to ratify those findings. For three days, Sam’s seizures went from what had been 10 to 20 an hour to about one every hour. The tincture was odd-looking—a bunch of cannabis leaves and stems in a brown mason jar marinating in oil. Using a syringe, we’d put a drop of the liquid on Sam’s tongue three times a day. It was supposed to be 20:1 CBD to THC.
But in July, coinciding with a new tincture, Sam’s seizures came roaring back. By the middle of the month he was having around 10 an hour. We tried increasing the dose. We tried tinctures bought at three medical cannabis dispensaries. They didn’t work either.
By mid-August we were thinking about putting Sam back on steroids. That was when the collective received test results for the latest batch of tinctures. They’d been advertised as having a 20:1 ratio of CBD to THC, but it turned out there was little CBD or THC in any of them. We also tested one of the other tinctures we’d bought from a supposedly reputable supplier. We’d been told it was 10:1 CBD to THC. It was really 3:1. The tincture that seemed to work for Sam in June hadn’t been tested, so we had no idea how to assess the temporary drop in seizures.

My first reaction to treating Sam with cannabis was that it sounded crazy. I associated pot with partying, not treating my son’s serious illness.

The experience with the unscientific methods of the collective and with the false labeling of products in dispensaries was infuriating and demoralizing. We knew the collective was still finding its way when we joined. And we knew that buying tinctures at dispensaries wasn’t like going to Walgreens. But somehow we convinced ourselves that the collective had mastered the basics—that you don’t tell parents a medicine is a certain potency unless you’ve had it tested. We really only had ourselves to blame, though. We didn’t have the tinctures tested either.
One parent we met through the collective decided to try to make a high-CBD tincture in her garage. Catherine Jacobson, whose son, Ben, also has epilepsy, has a PhD in neuroscience. She developed a method that took three days plus another five days of testing to produce a three-week supply.
It was anything but simple. She started by heating the cannabis for 30 minutes in her oven at 350 degrees to activate the THC and CBD. Then she put it in a plastic bag, crushed it, and dumped it into a beaker filled with ethanol. She let the mixture sit overnight on a stir plate, lab equipment which agitated the mixture, pulling the compounds out of the cannabis and into the ethanol. Then she strained it and put the ethanol on the stir plate for another eight hours until most of the liquid had evaporated. On the third day, she ran the mixture through a carbon column, using a vacuum pump. The column, which looks like a glass cylinder with carbon beads over a small opening at the bottom, separated CBD from the THC based on molecular weight. At the end of the process she’d have ten 10-milliliter test tubes. After testing, two or three would have a high-enough CBD-to-THC ratio to be usable. She’d concentrate those further to make medicine. Jacobson’s setup could only handle about a quarter pound of cannabis at a time.
That meant that if she started on a Friday night and spent all day Saturday, another half-day on Sunday, and waited another five days for test results, she’d have a 10-day supply of CBD the following weekend. The cost: about $750 for the cannabis and another $200 for ethanol. Two labs tested it at more than 100:1 CBD to THC. Ben and Sam seemed to respond to it. But she was only able to give us five days’ worth because it had been so labor-intensive to make.