the Child Neurology Society Regarding the Ketogenic
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
- The ketogenic diet is a carefully and individually
calculated dietary program that may be useful in children with
- 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
- 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
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
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