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A Talk with John Freeman: Tending the Flame

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Fall 2003
Volume 16, Number 2

Freeman's route with the ketogenic diet calls to mind Gandhi's comment: First they ignore you; then they laugh at you; then they fight you; then you win.

John Freeman, M.D.
John Freeman, M.D.

Whipping cream. Bacon. A lot of food that feels like sin is in the ketogenic diet, an approach to intractable epilepsy that was once embraced, then scoffed at. Now it's newly accepted again, thanks in no small part to efforts by pediatric neurologist John Freeman, M.D., and a dedicated team.

In the 1920s, when bromides and phenobarbital led approaches to epilepsy, the alternative-a high-fat, very low-carbohydrate and protein regimen-gave about a third of child patients excellent to complete control of their seizures. The rest on "the ketogenic" had at least 50 percent control or better. In part because the diet was so unusual-it mimics seizure-quelling metabolic changes that come, oddly enough, after days of fasting-and in part because nobody had a clue to how it worked, the ketogenic route seemed magical.

"All that, for the most part, hasn't changed," says Freeman. Today, parents of the nearly 500 children he and his team have treated still shake their heads that such an approach can work. "And what we don't know about the diet still exceeds what we do,"Freeman says. What's different, however, is that he and colleagues Patti Vining, M.D., and Eric Kossoff, M.D., have worn down naysayers-and there've been some-with sound research.

They've shown, for example, that diet advantages extend to teenagers, that children's growth is only mildly slowed and that side effects like kidney stones are manageable. They've correlated blood levels of one ketone body-a metabolic byproduct-with efficacy in stopping seizures and have published protocols on keeping patients on the dietary straight and narrow.

Q. There's no denying the obvious about the ketogenic diet: it's loaded with fat.
A. That's true. The version we use is 90 percent fat, with 4 to 8 grams of carbohydrate and 1 gram per kilogram weight of protein daily. Most people's first reaction is "yuk." Yes, patients drink heavy cream. But the diet's palatable: Mushroom omelets with bacon. Broccoli with cheese. There's variety.

Q. And you certainly need the fat...
A. … because it gives the desired effect. Normally, fat is burned to carbon dioxide and water. But that's in the presence of carbohydrate. Without the Mars bars, fat's incompletely oxidized. Then blood levels of ketones-specifically beta-hydroxybutyric acid (HBA) and acetone-begin to rise. We think ketones are largely responsible for the diet's effects. One of our studies shows seizure rates drop as levels of HBA rise.

Q. How would anyone think up such a diet for epilepsy?
A. What you're doing is mimicking the effect of starvation. In the 1920s, people discovered that fasting 10 to 20 days might control seizures for weeks or even years. The fellow who developed the ketogenic diet-not me-knew that rigorous fasting prompts ketosis. In 1922, after trying the diet on patients, he saw their seizures decrease rapidly.

Q. But then the diet went out of favor?
A. Yes. In 1938, Houston Merritt discovered Dilantin, a wonderful anticonvulsant but a setback to our understanding the ketogenic diet and epilepsy in general. It's easier to take a pill than to fast for 18 to 25 days and stick to a diet. So most people switched. Only a few places like Hopkins continued the diet for small numbers of patients.

Q. Yet, there's been a resurgence of interest?
A. There has. In 1993, a Hollywood producer, Jim Abrahams, called me. His young son Charlie had suffered thousands of seizures. He'd been through all the medications, had seen five different pediatric neurologists, had had a fruitless surgery and still lived with hundreds of seizures a day. Then Jim came across a chapter on the ketogenic diet in a library book. He called us; we put Charlie on the diet. The boy's seizures were completely controlled.

Jim was outraged that nobody'd informed him of the diet! So he began to publicize it. Then came The Deluge. After Charlie's story appeared on "Dateline," we got 5,000 phone calls. Now, years later, interest is still steady.

There've always been patients with uncontrollable seizures. Their desperation is real and the diet offers a valid option.

Q. How's the diet sit with most clinicians?
A. When we started publishing studies in 1996, nobody believed us. When we held a press conference after our first multicenter trial, the president of the American Epilepsy Society stood up and said, "it's never been studied in a blinded fashion." That really stuck in my craw. So we've steadily ticked off studies, all of which support the diet's efficacy and safety when done properly. And we've just finished the double-blind, crossover study and are analyzing data.

Many epileptologists don't use the diet. They believe it works-our studies show-but they lack staff. The secret to the ketogenic diet is the dietitian. There's a lot of interaction with the dietitian, a lot of education because the diet's not easy. Actually, it takes a team, and we have an excellent one.

Q. Why don't you see adults on the diet?
A. A good question. As far as we know, no biology lies behind its not working for them. At the least, it might help adults leave or lower medications. But I'm a pediatric neurologist.

Q. You say the diet may have other uses?
A. Possibly. We know ketones preserve heart muscle up to a point after heart attack, probably because an oxygen and glucose-starved heart can use them as an alternate energy source. Would a keto diet be helpful? What about strokes? The brain can metabolize ketones. Would it help stroke victims to go on a short keto diet?

Q. And the future for epilepsy patients?
A. Sooner or later, we'll understand how the diet works. Why, for example, does the diet control seizures in some children who've failed six drugs-not only while they're on it, but apparently forever after they've stopped?

Something has fundamentally changed epilepsy's "on" switch. We hope the diet will lead us to that switch, and to a therapy that doesn't involve whipping cream.



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