Movie First Do No Harm Boosts Popularity of Diet for Epileptic Children

High-Fat Diet Works for Some Kids, but It's Hard to Maintain

By Denise Mann
WebMD Medical News

Reviewed by Dr. Tonja Wynn Hampton

July 6, 2000 -- When it first aired in 1997, First Do No Harm, a made-for-TV movie starring actress Meryl Streep, generated a lot of interest in a special diet used to treat children with epilepsy. And now, after being re-aired this week on ABC, more and more people are hoping this diet is the answer to their children's hard-to-treat seizure disorder.

In the movie, a Midwestern family discovers that its youngest son suffers from epilepsy, a neurological condition that from time to time produces brief disturbances in the normal electrical functions of the brain. Against the wishes of her doctor, the mother -- who is played by Streep -- takes her son to Baltimore for treatment using the controversial ketogenic diet. At the time the story takes place, the diet had fallen by the wayside in favor of more commonly prescribed medications.

First studied in the 1920s as a treatment option, the ketogenic diet is high in fat and low in carbohydrates and protein, which results in a condition called ketosis. Ketosis occurs when the body burns the fat supplied in the diet because there is a limited amount of glucose to burn. Ketones, which are products left over after the fat is burned, build up in the blood and inhibit seizures, although exactly how is unknown. In addition, the diet limits fluids, which reportedly helps contribute to its success.

"The movie was based on a true story and we see this story often, but not everyone is cured by the diet and not everyone goes home to ride in a parade," says John Freeman, MD, director of the Pediatric Epilepsy Center at Johns Hopkins University in Baltimore and author of The Epilepsy Diet Treatment: An Introduction to the Ketogenic Diet.

Researchers at Johns Hopkins Children's Center found that of 150 children with difficult-to-control epilepsy, more than half of the patients had a 50% or greater reduction in seizures and a quarter experienced a 90% improvement.

"It's never 100% effective," he says. That said, however, "most of the children [on the diet] who are seizure-free, or 90% seizure-free, are on less medication, and often no medication at all."

If parents are interested in the diet, they should start by discussing it with their child's pediatrician. "There are many centers across the country that now do the medically supervised diet," he says. "If your pediatrician refers you to a center, ask the center how many diets they have done and what their success rate is."

"The message is that if a child's seizures are continuing despite medication, it's important for the child's medical condition to be re-evaluated," says Steven Schachter, MD, chair of the professional advisory board of the Epilepsy Foundation and an associate professor of medicine at Harvard University School of Medicine in Boston. "Other medications and non-pharmacological approaches, including the ketogenic diet, should be considered."

If your pediatrician is unfamiliar with the diet or other advances in treating childhood epilepsy, consider getting a second opinion, he says.

"The ketogenic diet has re-emerged as a standard treatment option in major epilepsy treatment centers throughout the country. Many of these centers are also now engaged in related basic and clinical research to better understand how the diet works and determine which patients it is most likely to benefit," says Martha Morrell, MD, chair of the Epilepsy Foundation's national board of directors, in a written statement. Morell is also a professor of clinical neurology at Columbia University and the director of the Comprehensive Epilepsy Center at Columbia Presbyterian Center of New York Hospital in New York City.

But that's not to say it is for every child or every condition, says Jin S. Hahn, MD, chief of pediatric neurology at Stanford University Medical Center in Palo Alto, Calif.

"I get a lot of e-mails from people who want to try this diet for everything from obesity to attention deficit disorder," Hahn tells WebMD. "This is a treatment for epilepsy. It's been shown to be effective in children with epilepsy that does not respond to treatment with medication."

Hahn says doctors typically reserve the ketogenic diet for children who have gone through two or three medications and are still having seizures, or those who are not tolerating the medications' side effects. Most of the evidence suggests that the diet does not work in adults.

In studies conducted at Hahn's hospital, about one-third of the children responded to the diet -- showing a 50% reduction in seizures. But one-third did not respond at all, and the final one-third didn't stay on the diet long enough because they could not tolerate it, he says.

"It requires a lot of commitment from parents to initiate and start the diet. It is very structured and restricted," Hahn says. "If you violate the diet by eating a cookie, cake, or ice cream, it may throw ketosis out of range and seizures may get worse." Follow-up support with dieticians, doctors and nurses, and a lot of support from family and community is often needed to assure that the treatment works.

The diet "requires a real, compulsive attention to detail," Schachter says. The drawback of the diet is that it is difficult to maintain especially if your child is around other children and has access to a refrigerator, he explains.

Freeman and colleagues are now recruiting patients for a National Institutes of Health-funded study on the effects of the diet.

For more information, visit WebMD's Diseases and Conditions Epilepsy page.

Vital Information:

• The ketogenic diet is a strict, high-fat, low-carbohydrate, and low-protein diet that is an effective treatment against epilepsy in some children who are resistant to treatment with medications.
• The diet is not for every child with epilepsy, as it can be difficult to maintain and may not work for every child.
• Parents of children with epilepsy should talk to their pediatricians if they are interested in the ketogenic diet.

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