When Etrudy Mitchell's daughter had her first epileptic seizure at 16 months old, it started off looking like a run of the mill temper tantrum.
"We thought that she was just wanting something that she couldn't have," Mitchell tells host Michel Martin on NPR's Tell Me More. But within moments, the situation took a dramatic turn. "She turned blue. The body turned limp, and we dialed 911."
Ellen Woods had a similar experience when her previously healthy 11-year-old son came in from playing basketball one afternoon and complained of being dizzy. Since her back was turned, she thought the noise she was hearing was him kicking the wall. But when she looked, she found him in the middle of a seizure.
Nearly 1 in 20 children will experience a seizure, Martin points out.
Epilepsy can be terrifying. Once referred to as "the falling sickness," this chronic condition involves abnormal firing in the brain, causing a person to lose motor control. And that can lead to shaking, staring spells, repetitive hand, arm, or mouth movements, or weird noises and incomprehensible words.
Sometimes, it leaves parents wondering whether their child will require lifelong supervision. "We really have very good options to make this chronic disorder very well controlled," says Dr. Imad Najm, an epilepsy specialist at the Cleveland Clinic. Around two-thirds of epileptic patients respond well to at least one of the 18 or so drugs approved to treat the condition, and others benefit from surgery. In the future, devices that deliver electrical pulses to the brain may also be approved as a way of decreasing seizures.
The past couple years have also seen great progress in explaining the disease.
That first seizure can still be a horrific sight for an unprepared parent, but Woods says it gets less scary over time.
The goal of parents whose children have epilepsy, Mitchell adds, is to minimize their own fears and instill their children with confidence, independence, and as normal and full a life as possible.
Both parents discuss the importance of having a family emergency plan. Also, they say it's vital that everyone who cares for a child with epilepsy, no matter how briefly, be aware of the condition and prepared to monitor a seizure or call emergency services if necessary.
Woods says her son, who is now 16, does have some rules that are different from his peers. He's not allowed to play football, because the risk of a brain injury is too high to tolerate.
But like his friends, he is learning to drive. Along with that, he's responsible for knowing what could trigger a seizure, including sleep deprivation and dehydration, and making responsible choices about when to get behind the wheel.
So while children and teens with epilepsy experience limitations, they are not relegated to a life of dependence. "They're gonna be able to live their life, but it's a life that is lived with moderation," Najm says.
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