In 2012, just before starting kindergarten, Sammy Meyers had the first of what would become thousands of seizures.
“I found him semi-unconscious,” recalls his mother, Becky. “I thought he was choking and checked to see if his airway was open, and then called 911. It didn’t even cross my mind that he was having a seizure.”
But Sammy had recently been falling a lot. The neurologist in the local emergency room in Albany, N.Y. diagnosed epilepsy, but thought it was a relatively benign form that medications could help.
Instead, Sammy got worse. “Within a matter of months, he went from four seizures a day to hundreds,” says Becky.
Sammy was having head-drop seizures, involving a sudden loss of muscle tone; myoclonic seizures, causing muscle jerking; and absence seizures. He would lose consciousness, sometimes so abruptly that his head would slam down on the table. Eventually, he was diagnosed with Doose syndrome (myoclonic astatic epilepsy), a severe form of generalized epilepsy that is known to be medication-resistant.
Through the Epilepsy Foundation of Northeastern New York, Becky knew of another child with Doose syndrome who had been treated with a high-fat, very low-carbohydrate diet called the ketogenic diet and was still seizure-free after four years.
The Albany neurologists were skeptical, so the family contacted the other child’s neurologist, Ann Bergin, MB, ScM, at Boston Children’s Hospital. “By this time, Sammy was having a seizure every 30 seconds to a minute,” says Becky.