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Due to the effort of Hollywood director Jim Abrahams, the ketogenic diet has, once again, become an accepted therapy for pediatric epilepsy. In 1994, Jim’s year-old-son Charlie began to have seizures, as many as 100 in a day. When the boy did not respond to medication, Jim began to search for alternatives. He came upon a book about “a diet that supposedly cured half of the epileptic kids who went on it.”
The ketogenic diet was developed at Johns Hopkins and the Mayo Clinic in the 1920s. As more seizure medications became available in the 1940s and 1950s, its use waned.
Jim Abrahams sought out Dr. John Freeman, who supervised 12 to 18 patients on the ketogenic diet at Johns Hopkins each year. Within a few days of starting the diet, two-and-a-half year old Charlie Abrahams stopped having seizures. Their success caused the Abrahams to set up the Charlie Foundation to Help Cure Pediatric Epilepsy. The foundation funded a book, published in 1994, called The Epilepsy Diet Treatment: An Introduction to the Ketogenic Diet (Demos Press). Abrahams also produced a video about Charlie’s story and sent a copy to every child neurologist in the US.
In October 1994, NBC’s Dateline ran a story about the Abrahams’ experience and parents began clamoring for similar help: “Tens of thousands of emails and letters from families with epileptic children flooded his office.” One mother’s story became the basis of the 1997 made-for-television movie starring Meryl Streep, First Do No Harm. By April 1995, physicians, nurses, and dietitians from 11 US and Canadian hospitals were trained to use the diet by Dr. Freeman with funding from the Charlie Foundation. An update on Dateline (July 22, 2003) reported that Charlie was successfully weaned off the diet at age 7 on the third attempt. At ages 4 and 6, seizures returned when the diet was discontinued and disappeared again when the diet was re-instated. Now at age 10, Charlie is an active fourth grader.
The high-fat ketogenic diet forces the body to burn fat, as it does during fasting when carbohydrates are not available. For some still unknown reason, the ketones that are produced during fat metabolism can prevent seizures. While patients are encouraged to eat high-fat foods (i.e., cream, mayonaise, butter), they can eat only a little protein and carbohydrate. They are also allowed only enough calories to maintain their weight. Children are required to take a multivitamin because the diet lacks some necessary nutrients. Children who respond to this diet can often return to a normal diet after two years without having seizures.
The July 2003 Dateline report says that ” … increasing numbers of doctors now no longer consider the diet alternative therapy but an accepted form of treatment.” Although the diet is not often used in treating adults, an abstract of a study by Y Schiff and T Lerman-Sagel reported success in treating a 20-year-old man with intractable epilepsy since early childhood with a medium-chain triglyceride ketogenic diet. The authors say the diet has controlled the man’s seizures and improved his quality of life. They encourage a therapeutic trial of the ketogenic diet for all ages of persons with intractable epilepsy.
Diet as possible epilepsy treatment? Dateline NBC 22 July 2003 www.msnbc.com/news/900136.asp?0sl=-42
High Fat and Seizure Free. John Hopkins Magazine April 1995. www.jhu.edu/~jhumag/495web/fat.html
Ketogenic Diet for Child Epilepsy and Seizure Control sponsored by National Institute of Neurological Disorders and Stroke. www.clinicaltrials.gov/ct/gui/show/NCT00004729?order=15
Schiff Y, Lerman-Sagie T. Ketogenic diet-an alternative therapy for epilepsy in adults. Harefuah. 1998 Apr 1;134(7):529-31, 591
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