SUDEP & Ketogenic Therapies: Part Two

At The Charlie Foundation, our greatest hope is that people achieve seizure freedom—be it through medications, surgery, cannibidiol, or diet therapy.  The question we ask is why the esteemed authors of a recent SUDEP article would choose to censor nearly 100 years of published science, including two randomized controlled studies, indicating the Ketogenic Diet reduces seizures by at least 50% in half the people who try it, and eliminates seizures in 15-25%.

In March, 2017 the American Academy of Neurology and the American Epilepsy Society published their SUDEP (Sudden Unexpected Death in Epilepsy) practice guidelines.  They reported “with high confidence in evidence” that “SUDEP risk increases in association with increasing frequency of GTCS (generalized tonic clonic seizures).”

GTCS, also know as grand mal seizures, are a hallmark of myoclonic astatic epilepsy (Doose Syndrome).

According to the 2009 published Medical Consensus Guidelines for administering the Ketogenic Diet, “KD should be strongly considered after the failure of two or three medications regardless of age or gender…in the case ofmyoclonic astatic epilepsyit should be considered earlier.”

Yet somehow the authors of the new practice guidelines fail to mention a word about diet therapy.

The practice guidelines go on to say, “ …having frequent GTCS, and the absence of seizure freedom, are strongly associated with SUDEP.

Again, the authors chose to disregard the overwhelming evidence that after the failure of two or three medications for most non-surgical candidates, the best way to reduce or eliminate seizure frequency–and hence reduce or eliminate the chance of SUDEP–is with a Ketogenic Diet Therapy.

The cornerstone of health care is “evidence based medicine”– in other words medicine that is based on science. We feel that to ignore Ketogenic Diet Therapies for medication-resistant epilepsy, especially while raising the specter of death, is unconscionable.