One morning, about 20 years ago, Tracy Dixon-Salazar heard a strange sound coming from her daughter’s bedroom. She rushed in to find 2-year-old Savannah jerking violently in bed, apparently choking. But when the paramedics came, they couldn’t find an obstruction or anything else to cause her condition.
“No one could explain why I had a healthy 2-year old one day and the next day that was gone,” Tracy says.
Savannah was having seizures caused by a severe form of epilepsy called Lennox-Gastaut syndrome (LGS). LGS seizures typically start before age 4, according to the National Institute of Neurological Disorders and Stroke, and there are many types. Most LGS patients experience frequent seizures that do not respond to current epilepsy therapies. And they often have memory problems, learning deficits, developmental delays and behavioral issues.
For two-thirds of people with all forms of epilepsy, including Savannah, the cause is unknown. Treatment is even more challenging.
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