A story in last week's New York Times Magazine about a child on a 90 percent fat diet was not an expose of child abuse. The article described a family's desperate attempt to control nine-year-old Sam's epilepsy by feeding him bacon and butter in quantities only Costco can supply.
It's known as a ketogentic diet, and two Johns Hopkins Children's Center neurologists just published a piece in the Advances in Pediatrics journal that discusses how the diet has been misunderstood.
The ketogenic diet has been prescribed since 1921 to epileptic patients whose symptoms become resistant to medication -- but it has not been used as frequently as it should be, argue doctors John Freeman and Eric Kossoff. That could be because the diet goes against almost all nutritional advice the average person has ever received, they acknowledge.
The diet is not for the average person -- and it's not even for the average person suffering from epilepsy. Sam had tried eleven traditional medications to reduce the 100 to 130 seizures he was suffering every day. None of them helped, and one even caused him to hallucinate while another gave him hand tremors.
So Sam started a diet that has him on a weekly regimen of about twenty slices of bacon, a quart and a third of heavy cream, a stick and a half of butter, and nine eggs -- among other fatty foods. He must eat a certain number of calories each day with a specific ratio of fat, protein and carbohydrates; his family has a full-time dietitian to monitor his meals and a web-based calculator that formulates appropriate meals.
Sam's seizures are down to about six a day, and his family hopes he can stop the diet in May -- at which point he will have been on it for two years. That's a typical stopping point for many patients who experience success with the diet; at that point, the spike in cholesterol that many patients see while on the diet typically fades.
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Sam's cholesterol and the fat level in his bloodstream have risen, but his family and doctors are taking solace in the survey at Johns Hopkins Children's Hospital that followed 101 former ketogenic patients who had been off the diet for about six years or more, and showed normal cholesterol and cardiovascular levels and growth rates.
A controlled study at University College London in 2008 found that 38 percent of patients on the diet reduced their seizure frequency by more than 50 percent and 7 percent reduced their frequency by more than 90 percent. Another study by Elizabeth Thiele, head of the pediatric epilepsy program at Massachusetts General Hospital for Children, showed that 7 out of 10 patients reduced their seizure count more than 90 percent with the diet.
While the diet is still underused and misunderstood, according to Freeman and Kossoff, scientists have begun to study whether it can help control Parkinson's, Alzheimer's, ALS., certain cancers and tumors.