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Some Kids on Epilepsy Diet Still Seizure-Free

Oct. 2, 2001 -- In the 1997 Meryl Streep movie "First Do No Harm," the epilepsy diet saves her child. Long-term results of a clinical trial show that real life can be just like the movies -- sometimes.

It's not the first thing parents should try. Modern drugs control seizures for most children with epilepsy. But some kids keep having seizures despite medication -- often more than 400 a month. Others get some relief, but can't tolerate the side effects. Many of them have tried combinations of six different drugs to little or no avail. For these children, the diet offers hope.

The high-fat, low-carb, calorie-restricted diet is very strict. It's tough for the kids to get used to, and it asks a lot of parents. One champion of the diet is John M. Freeman, MD, director of the pediatric epilepsy center at Johns Hopkins University. Freeman recently reported results from 150 children put on the diet for hard-to-treat epilepsy. After a year, one in 10 kids was seizure free -- and about half of them had at least 50% fewer seizures.

Now, Freeman's team reports that many of these children remain better three to six years after starting the diet.

"For those 83 of the 150 kids who stayed on the diet for a year, we found that a quarter of them had 90% or greater seizure control," Freeman tells WebMD. "Thirteen percent were seizure free. The remaining children were 50%-90% better. What was most amazing was that almost all of those children were off the diet, and were off medication. Most were on the diet for up to two years."

The diet resembles the famous Atkins weight loss diet in that it banishes carbohydrates from the diet and permits some proteins and fats -- in the case of the keto diet, lots of fats. The idea is that the body thinks it is starving when it doesn't get carbohydrates, so it burns fats instead of sugars and fills the blood with substances called ketones. That is why it's called the ketogenic diet, or keto diet for short. But the keto diet is far more drastic than the Atkins diet. And the keto diet closely counts calories so that kids are kept at exactly the normal weight for their height.

It makes a huge change in how the body gets its energy. The big question is why this change stops seizures in some people with epilepsy.

"We don't have any idea why it works," Freeman says. "It seems to work on different seizure types in different-age children. In 1995, very few people in the epilepsy community believed it worked. I think now everybody says, 'Well, we knew all the time that it worked.' This is the first really long-term study that shows the diet not only is effective but that the effect remains long after the diet is gone."