Some Kids on Epilepsy Diet Still Seizure-Free

From the WebMD Archives

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.

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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."

Not every expert agrees that the keto diet works as often in real life as it does at the Johns Hopkins center. Wendy Gayle Mitchell, MD, is professor of neurology and pediatrics at the University of Southern California and professional advisor to the Los Angeles County Epilepsy Society. Gayle says that the fame of Freeman's program attracts many parents whose children have not truly exhausted all other medical options.

"Most centers don't have as spectacular results as he does," Mitchell tells WebMD. "While we find the diet useful occasionally, if patients are chosen who are really [untreatable by all antiseizure drugs], the number who will have complete [relief from] their seizures is miniscule."

Many other medical centers use one form or another of the diet. One such program is the Epilepsy Center at St. Louis Children's Hospital. Susan T. Arnold, MD, is the program's co-director.

"We do use the keto diet a fair amount. We've had more than 100 children on it in the last eight years or so. I don't think it is a miracle cure for epilepsy, but I certainly don't think it is crazy or all due to choosing easy patients. Most kids on the keto diet [get little relief from] many medications. I do think if you select patients well you can have a very good response rate. I don't think it is right for every kid with seizures."

Freeman says that the limited success of the keto diet may offer a clue to the basic causes of epilepsy -- and to better treatments.

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"We have a lot to learn about epilepsy and how seizures work, and very much to learn about how the diet works," Freeman says. "Hopefully we will one day make a pill that reproduces the effects of the diet."

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