The Charlie Foundation for Ketogenic Therapies just concluded our 5th Global Symposium for Diet Therapies for Epilepsy and Other Neurological Disorders in Banff on Saturday, September 25. It could not have gone any better. Approximately 600 physicians, scientists, and dietitians attended from 38 countries. Enthusiasm was palpable.
The Epilepsy Foundation was a conference sponsor. The Charlie Foundation will be sending supporting videos to the Epilepsy Foundation for the Wellness Institute's Healthy Eating section on epilepsy.com in the coming months.
Highlights from the Conference
Epileptologist after epileptologist said that “refractory” or “drug resistant” epilepsy should be defined as "after the failure of two medications" — in children AND adults with epilepsy. That is when they strongly consider ketogenic diet therapies.
According to two surveys of pediatric neurologists done by Johns Hopkins, the leading reason why the ketogenic diet is underutilized is the absence of dietary support-trained keto dietitians. Emerging applications of the ketogenic diet were discussed at the symposium. These include the diet for autism, early onset Alzheimer’s Disease, type 1 and 2 diabetes, malignant brain tumors, and others. As these applications develop, the epilepsy community will be among the benefactors. Hospitals will need to have trained ketogenic diet nutritionists on staff.
With the stroke of a pen, physicians can get insurance reimbursement of $150,000 to $250,000 for two weeks of ACTH treatment for a single baby suffering with infantile spasms. However, it’s extraordinarily difficult for those same physicians to get reimbursement of $75,000 to $100,000 salary per year for a ketogenic diet dietitian, many of whom help dozens of families dealing with a variety of epilepsy syndromes, including infantile spasms.
For more information about the conference, download the syllabus: