by Jim Abrahams – Executive Director of the Charlie Foundation
Recently there has been a renaissance of the decades old term “Magic Diet” to explain diet therapy to young children with epilepsy who are about to begin a ketogenic diet. The idea is that “magic” will help them abide by its restrictions and add to their hope of getting better. If this encourages children to be strong enough to try a ketogenic diet, then it would seem helpful.
But I have a couple issues with “Magic Diet.”
First, what happens to the child with epilepsy who is told he is going on a “magic diet,” but is among the one third for whom the diet shows no improvement? Suddenly he not only has to live with debilitating drugs and seizures, but is stuck with the haunting question of “why didn’t the magic work for me? Why didn’t Santa stop at my house too?” The hope becomes false hope–at who knows what cost? Is it fair to risk adding that to his burden?
Secondly, of course, is that the ketogenic diet for epilepsy is not magic. It’s a scientific treatment with better statistics than any anti-seizure drug: 50% seizure reduction in over half of the children who try it; 15-24% become seizure free. Older children and adults are capable of achieving these same improvements in seizure control. When a child breaks her arm you don’t tell her “we’re going to put your arm in a magic cast.” You tell her the cast can help your arm to heal. Similarly, the ketogenic diet can help a brain to heal.
Progress in acceptance of diet therapy for epilepsy over the last 25 years has been slow but dramatic. What was considered a treatment of “last resort” in 1993, today, according to a 2018 published consensus agreement written by an international team of epilepsy experts, “should be strongly considered after the failure of two medications regardless of age or gender–with certain epilepsy syndromes earlier or even treatment of choice.” Their opinions were based largely on the conclusions of over 600 published studies regarding the diet’s efficacy and mechanisms between 1995 and 2017.
Despite this advancement, today the ketogenic diet for epilepsy remains tragically underutilized. There is a world epilepsy population of over 60 million people—most of whom would benefit from diet therapy. To assume 5 thousand of those people are using a ketogenic diet would be optimistic.
In a disease that goes as far back as the beginning of man and is as well known for its unthinkable stigma and misunderstanding as its severity, does the “magic diet” myth really help clear things up? It is within this context I ask my question.
Why is this all so urgent? There is a 50 year old unchallenged statistic that after the failure of a first antiepileptic medication, there is a 13% chance a second will work and a 1% chance a third will stop a child’s seizures – 50 years! Unchallenged! In a world that depends on “rigorous science,” even the whiff of “magic” gives the many medical naysayers who refuse to share those statistics an argument to hang their hats on. It impedes the diet’s advancement from “last resort” toward its rightful position as standard of care. Just imagine how hard a parent would fight for a nonpharmaceutical treatment if she knew those 50 year old unchallenged facts.
In 1993 Charlie, our one year old son, was suffering multiple daily seizures and using multiple daily drugs as well as suffering side effects of a failed brain surgery to control his epilepsy. He started the ketogenic diet. He was drug and seizure free within a month. He was on the diet for five years and was cured. Charlie has never had another seizure. Does that feel like magic? Absolutely! Was it magic? Absolutely not!