Hopkins reaps some remarkable results by using fatty foods to prevent seizures

March 30, 1993|By Douglas Birch | Douglas Birch,Millicent T. Kelly, dietitian at The Johns Hopkins Children's Center. Staff Writer

By the time she was 10, Megan Lee Hardgrave's trancelike epileptic seizures, which she called "the stares," were gaining strength. She would watch her parents' faces darken into purple or blue blobs, or freeze while gazing at the blackboard in school or get lost inside her family's church.

Powerful medicines left the Carrollton, Texas, girl sick and emaciated. But even an arsenal of drugs failed to halt the seizures, which struck as often as once an hour. In November 1988, she came to Johns Hopkins Hospital in Baltimore for tests to determine whether a risky operation to remove half of her brain would help.

Doctors decided it would not. So they offered her parents an alternative, a weird diet loaded with fatty foods such as mayonnaise, butter and bacon -- the ketogenic diet.

The Hardgraves were baffled.

"We came up here for brain surgery, and you suggest a diet? Are you serious?" said David Hardgrave, a manager with a Dallas engineering firm.

Doctors have used the ketogenic diet to treat seizures, essentially fierce electrical gales in the brain, for more than 70 years. But its use has declined over the past half-century with the development of modern drugs and surgical techniques. Many neurologists now regard it as a relic of a less sophisticated age -- difficult to follow, often ineffective and, at best, a last resort.

Hopkins, though, retains a stubborn faith in the diet, using it to treat 15 to 20 children a year with what doctors there say is remarkable success.

Dr. John M. Freeman, director of the pediatric epilepsy unit at Hopkins' Children Center, and several of his colleagues last year published a study showing the diet stopped or significantly reduced seizures in more than two-thirds of their patients.

The study, though, was a review of past cases and not the type of controlled trial researchers consider the best test of a treatment.

Other doctors, Hopkins neurologists say, should be more willing to prescribe the diet because it carries neither the mind-fogging side effects of many medicines nor the perils of surgery.

Four years ago, when Dr. Freeman and Dr. Eileen P. G. Vining recommended the diet to Megan's parents, they warned that it required a lot of work, will power and a two-year commitment.

The diet permits only a sprinkling of protein and carbohydrates. Sugar and starch, including staples such as bread and potatoes, are forbidden. Each portion of every meal must be planned in advance and weighed to the gram.

No snacks are allowed. A candy bar or a few corn chips from a friend's school lunch, the doctors warned, might lead to an onslaught of uncontrollable seizures.

Megan's parents said it would be up to their daughter.

Dr. Freeman, a tall man with unruly gray hair and a honeyed bass voice, called her out of a playroom.

"How tough are you?" he asked.

"Pretty tough," the skinny 10-year-old replied.

He told her about the diet. She would have to be strong enough to fast for two days, and then stick with planned meals for at least two years. She might not like the discipline, she might not like the food. But maybe she would rid herself of seizures, which had begun at age 2 1/2 .

Megan smiled a big smile, her parents recall, and thrust out her hand.

"You've got a Texas deal," she said.

Megan, now 14, has been seizure-free for more than three years. She stopped taking anti-convulsant drugs in 1989 and ended her diet in 1991. Now she can now eat what she likes, and doctors consider her cured.

The diet was as difficult as Dr. Freeman warned. But she said she never regretted that hard bargain.

"He was giving me my life back, basically," she said. "All I had to do was say 'All right, I agree to it.' And I got myself my life back."

Unbalanced and high in fat

A ketogenic diet violates most of the rules of good nutrition.

It's loaded with saturated fats, though Dr. Freeman says studies suggest it does not raise blood cholesterol levels.

It's so unbalanced that patients must supplement meals with massive doses of multivitamins.

"It's not anything you'd ever think of," says Millicent T. Kelly, 67, the dietitian in charge of the ketogenic diet at Hopkins since 1960.

It appears to work because of a quirk in the chemistry of the human body. Eating mostly fatty foods, it seems, has some of the same effects on the body as starvation.

In biblical times, people discovered that fasting can reduce or stop seizures. But when a fast ended, seizures returned.

After 24 hours of fasting, doctors later discovered, the body exhausts its main source of energy, blood sugar, and begins to metabolize body fat. This "burning" of fat creates an acidic byproduct called ketones. When ketone levels in a patient's blood rise above a certain point, seizures may diminish or disappear.

No one knows why this happens. But that's not surprising -- little is known about what causes epilepsy in the first place.

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