Statement of the Child Neurology Society Regarding the Ketogenic Diet. On Sunday, February 16, the made-for-television movie, "...first do no harm," starring Meryl Streep, aired on ABC. As a service to parents and other care givers concerned with the well-being of children with epilepsy, Michael Cohen, MD, President of the Child Neurology Society, has asked John Freeman, MD, Director of the Pediatric Epilepsy Clinic at Johns Hopkins University, to comment on the film and provide a brief overview of the ketogenic diet used by the child in the film to control his seizures.

The ketogenic diet is a high-fat, very Iow carbohydrate diet used in some children who have epilepsy that is difficult-to-control with conventional drugs. Although the diet was first developed in the 1920's and widely used through the 1940's, it fell into disuse as new medications for epilepsy became available. Recent widespread media attention to this treatment has Increased its use by many centers, and child neurologists are increasingly being asked about the diet.

On February 16, 1997 a made-for-TV film was shown on ABC. This film, starring Meryl Streep, dramatized a true story about a child successfully treated by the diet, and can be expected to generate considerable discussion and many questions. The Child Neurology Society is developing this position statement to assist with responses to this anticipated demand.

• The ketogenic diet is a carefully and individually calculated dietary program that may be useful in children with difficult-to-control epilepsy.

• The diet simulates the effects of prolonged starvation by causing the body to burn fat rather than carbohydrate as its main energy source. The ketone bodies, which are the result of this fat metabolism, are utilized as an energy source by the brain. Why this results in improved seizure control is unknown.

• The diet has never been evaluated in a scientifically controlled manner. However, less rigorous studies done over many years suggest that 30% of children treated with the ketogenic diet will have their seizures well-controlled (>90%). Half of those children will be seizure-free. An additional 30-40% will have their seizure frequency decreased by more than 50%. Approximately 25-30% of patients who try the diet will find that it is not sufficiently effective, and discontinue the diet and return to the use of medications. Some children may be able to decrease or discontinue their medications while on the diet.

• The diet has not been adequately studied in adults.

• The major side-effect of the diet is kidney stones, in some patients calcium oxalate, and in others uric acid stones, which can be successfully treated with adequate fluid intake and acidification of the urine. Increases in plasma lipids have been reported, but their significance is not clear.

• The proper role of the diet in the management of children with difficult-to-control seizures remains to be fully defined. Most children with few seizures will have their epilepsy controlled with one medication. Even when the first medication fails to control the seizures, it is easier and more reasonable to attempt control with a second medication. The diet should be considered only for children who have more than two seizures per week despite treatment with at least two different anticonvulsant medications. The diet is also used when the frequency of seizures, despite medications, interferes with the child's function, or when the medications themselves cause substantial adverse reactions.

• The diet should only be used under proper medical supervision, and by a team which can provide support for the family during the difficult period of adjustment after the diet is initiated.

The decision about whether the diet is or is not appropriate for an individual child should be the result of discussions between informed parents and their physician. The diet is not a cure-all, nor is it intended for everyone with epilepsy.

John Freeman, M.D.

Director, Pediatric Epilepsy Clinic

Johns Hopkins University

2/18/97

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