National Epilepsy Awareness Month: How a Hail Mary diet helped our daughter

For a parent, there is no feeling like helplessness.

November is National Epilepsy Awareness Month. The Epilepsy Foundation will tell you that one out of 26 people in the United States will develop the disease at some point during their lifetime. That’s a startling figure, but it can also obscure an incredibly broad range of impacts. Most epileptics lead typical and productive lives, and new generations of anti-seizure medications usually offer considerable control. Chief Justice John Roberts has battled seizures. So has Elton John. Some epilepsies, though, are much more complicated and serious. Intractable forms of the disease are highly resistant to medications and can lead to a lifetime of seizures. 

Kyla spent weeks in the hospital and the seizures rarely abated. Doctors refer to this as "explosive onset" and it is terrifying. Neurologists piled on one medication after another in a desperate attempt to calm her brain, but nothing worked. We ultimately returned home with a child we barely recognized. A preliminary diagnosis was devastating. Kyla’s seizures, now numbering nearly twenty a day, were unlikely to stop. Her suspected form of what’s known as a catastrophic epilepsy suggested steady cognitive decline that would result in a lifetime of dependence. Our lives would never be the same.