Epilepsy’s Big, Fat Miracle
Once every three or four months my son, Sam, grabs a cookie or a piece of candy and, wide-eyed, holds it inches from his mouth, ready to devour it. He knows he’s not allowed to eat these things, but like any 9-year-old, he hopes that somehow, this once, my wife, Evelyn, or I will make an exception.
We never make exceptions when it comes to Sam and food, though, which means that when temptation takes hold of Sam and he is denied, things can get pretty hairy. Confronted with a gingerbread house at a friend’s party last December, he went scorched earth, grabbing parts of the structure and smashing it to bits. Reason rarely works. Usually one of us has to pry the food out of his hands. Sometimes he ends up in tears.
It’s not just cookies and candy that we forbid Sam to eat. Cake, ice cream, pizza, tortilla chips and soda aren’t allowed, either. Macaroni and cheese used to be his favorite food, but he told Evelyn the other day that he couldn’t remember what it tastes like anymore. At Halloween we let him collect candy, but he trades it in for a present. At birthday parties and play dates, he brings a lunchbox to eat from.
There is no crusade against unhealthful food in our house. Some might argue that unhealthful food is all we let Sam eat. His breakfast eggs are mixed with heavy cream and served with bacon. A typical lunch is full-fat Greek yogurt mixed with coconut oil. Dinner is hot dogs, bacon, macadamia nuts and cheese. We figure that in an average week, Sam consumes a quart and a third of heavy cream, nearly a stick and a half of butter, 13 teaspoons of coconut oil, 20 slices of bacon and 9 eggs. Sam’s diet is just shy of 90 percent fat. That is twice the fat content of a McDonald’s Happy Meal and about 25 percent more than the most fat-laden phase of the Atkins diet. It puts Sam at risk of developing kidney stones if he doesn’t drink enough. It is constipating, so he has to take daily stool softeners. And it lacks so many essential nutrients that if Sam didn’t take a multivitamin and a calcium-magnesium supplement every day, his growth would be stunted, his hair and teeth would fall out and his bones would become as brittle as an 80-year-old’s.
Evelyn, Sam’s twin sister Beatrice and I don’t eat this way. But Sam has epilepsy, and the food he eats is controlling most of his seizures (he used to have as many as 130 a day). The diet, which drastically reduces the amount of carbohydrates he takes in, tricks his body into a starvation state in which it burns fat, and not carbs, for fuel. Remarkably, and for reasons that are still unclear, this process — called ketosis — has an antiepileptic effect. He has been eating this way for almost two years.
Curiosity bordering on alarm is the only way to describe how people receive this information. “In-teresting,” one acquaintance said. “Did you make this up yourself?” Another friend was more direct: “Is this a mainstream-science thing or more of a fringe treatment?” We are not surprised by these reactions. What we are doing to Sam just seems wrong. The bad eating habits of Americans, especially those of children, are a national health crisis. Yet we are intentionally feeding our son fatty food and little else.
But what we are doing is mainstream science. Elizabeth Thiele, the doctor who prescribed and oversees Sam’s diet, is the head of the pediatric epilepsy program at Massachusetts General Hospital for Children, which is affiliated with Harvard Medical School. In fact, the regimen, known as the ketogenic diet, is now offered at more than 100 hospitals in the United States, Canada and other countries. We’re not opposed to drugs; we tried many. But Sam’s seizures were drug-resistant, and keto, the universal shorthand, often provides seizure control when drugs do not.
The idea of food as medicine has been a controversial topic in this country in recent years. For decades the fight that the late Robert Atkins and his low-carb acolytes had with mainstream medicine has been as vitriolic as a religious war. There are food cures for everything from cancer and heart disease to cataracts. Doctors talk about diet as a part of basic good health all the time. But talk to them about a diet instead of drugs to stop an infection or treat a tumor and most would be visibly alarmed, and in many cases, they would have good reason to be. A decade ago most doctors held the same contempt for keto. An Atkins-like diet that worked as well — and often better — than antiepileptic drugs? Common sense suggests that’s crazy.
But when it comes to keto’s impact on pediatric seizures, there is wide acceptance. There are about two dozen backward-looking analyses of patient data suggesting keto works, and, more significant, two randomized, controlled studies published in 2008. One of the trials, by researchers at University College London, found that 38 percent of patients on the diet had their seizure frequency reduced more than 50 percent and that 7 percent had their seizure frequency reduced more than 90 percent.
Those numbers may look low, but they’re not. These were patients for whom antiepileptic drugs had already failed. For children with certain kinds of drug-resistant seizures, Thiele’s clinical data show an even better response: 7 out of 10 were able to reduce their count more than 90 percent with the diet. Those statistics are as good as those for any antiepileptic drug ever made. Other pediatric neurologists get similar results. The diet has cut Sam’s seizures by 75 percent.
That is a big deal. There are dozens of antiepileptic drugs on the market, many approved in the last 15 years. The newer ones work with fewer side effects, and that’s important. But the percentage of patients who take drugs and still have seizures hasn’t changed meaningfully in decades. About a third of the nearly 3 million epileptics in the United States have drug-resistant seizures, and doctors estimate that at least 250,000 of those drug-resistant patients are children. Since keto often works when drugs do not, neurologists finally see a way to fix that problem.
Fred Vogelstein, a contributing editor for Wired, is writing a book about the intersection of technology and media in Silicon Valley.
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