About twenty years ago, the epilepsy community became aware of Sudden Unexpected Death in Epilepsy (SUDEP). In my view, nothing has exposed the medical community’s anti-ketogenic diet bias more than in the area of SUDEP. In March, 2017 the International League Against Epilepsy (ILEA) and the American Academy of Neurology (AAN) published their SUDEP practice guidelines. The purpose of this paper was to determine the incidence of SUDEP drawn from studies on people who had died from SUDEP and the treatments they had been on–then confer guidelines. Apparently none of them were on KD therapy because it wasn’t mentioned. In the guidelines they state, “By far the greatest clinical risk factor for SUDEP is frequency of generalized tonic clonic seizures (GTCS).” The report further states that “the SUDEP risk increases in association with increasing frequency of GTCS occurrence (high confidence in evidence).”
Jeff Buchhalter MD PhD, a neurologist and leading SUDEP expert, says, “We know that a Ketogenic Diet prevents those kinds (tonic clonic) of seizures in children.” He goes on to say, “When thinking about the connection between dietary therapies and reducing the risk for SUDEP, I think there is a very direct connection.” Watch his video discussing SUDEP here.
New research is showing this connection also. Nonetheless, the American Epilepsy Society (AES) ILEA, and AAN remain silent on the subject of diet and SUDEP. Instead their guidelines include, “Clinicians should inform their persons with epilepsy that seizure freedom, particularly freedom from GTCS is strongly associated with a decreased risk of SUDEP.” Even with their scientific standard being lowered to “more likely”, these influential organizations completely omit diet therapy for epilepsy while suggesting adherence to drugs.
Its interesting to note that the authors of the practice guidelines disclose that they receive benefits from pharmaceutical companies UCB, Eisai, Janssen, Lilly, Servier, Astra Zeneca and Neuro Sigma among others.
Again, I appreciate the need for evidence-based medicine. But in scaring “their persons with epilepsy” with the possibility of sudden death, then failing to mention the option of ketogenic diet therapy as a treatment, I believe the AES, the ILEA and the ACN are making a blatantly incomplete statement, an omission that could endanger lives.