Stories about: Epilepsy

Ketogenic diet turns around a boy’s severe epilepsy

ketogenic diet epilepsy
Sammy enjoys the coconut oil cookies that helped him become seizure-free.

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.

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Children's researcher speaks at TED MED

As mentioned yesterday, TED MED is in full-swing. Thus far there have been several interesting speakers, each with a unique take on medicine, healthcare and even entertainment. One such speaker was Children’s Director of Epilepsy Research, Frances Jensen, MD, who spoke about the many things she’s learned studying the brains of teenagers. As a renowned expert on the developing brain, it’s certainly not the first time Jensen has spoken about the subject.

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Deciphering epilepsy

Epilepsy is a disease that remains stubbornly bewildering—to the nearly three million Americans who have it and the doctors who treat it. In some cases, it can be traced to an underlying disease, injury or brain malformation. But in most cases, its origins are a mystery. Last night, 60 Minutes re-aired an episode featuring the epilepsy research of Children’s Frances Jensen, MD. Make sure to check out this blog post by Jensen, where she explains the importance of funding epilepsy research. Jensen was also just appointed president of the American Epilepsy Society.

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