Dec. 22, 2010 -- Researchers who followed 245 children with epilepsy into adulthood found that 24% died over a 40-year period, a rate that was three times higher than expected in the general population.
More than half (55%) of these deaths were related to epilepsy, says researcher Shlomo Shinnar, MD, PhD, director of the comprehensive epilepsy management center at Children's Hospital at Montefiore Medical Center in New York City.
The increased risk of death was limited to people who had not been seizure-free for at least five years and those who had another neurologic condition, particularly severe cognitive impairment, he tells WebMD.
The good news: About half of the children outgrew their seizures and their risk of dying was no higher than expected, Shinnar says.
"The findings reinforce the importance of patients and doctors taking epilepsy very seriously and doing their best not only to control seizures, but to achieve seizure freedom," Shinnar says.
"It's complete remission that eliminates the higher risk of death -- not [having] fewer seizures," he says.
The new study appears in the Dec. 23 issue of the New England Journal of Medicine.
Persistent Seizures Major Risk Factor for Dying
The study involved children who were living in Finland in 1964 and who had epilepsy, defined as having had at least two unprovoked seizures.
Over the next 40 years, 60 of them died, 33 due to epilepsy-related causes, typically seizures or suspected seizures.
People whose seizures persisted into adulthood were at the highest risk of dying:
- Only four deaths occurred among 103 participants who hadn't had a seizure in the past five years and who were not taking medication at the time of death, an annual rate of 1.5 deaths per 1,000 person-years.
- There were five deaths among 35 people who were in remission and who were taking medication, a rate of 11.8 deaths per 1,000 person-years.
- There were 51 deaths among 107 people who had not been seizure-free for at least five years, a rate of 15.9 deaths per 1,000 person-years.
Achieving Seizure Freedom
Shinnar stresses that parents of children with epilepsy should not "freak out and think their child is going to die.
"The increased risk of death doesn't start until late adolescence and occurs primarily in adulthood," he says. And some children outgrow seizures for unknown reasons, he says.
What you should do, Shinnar says, is set a goal of seizure freedom. If your doctor puts you or your child on a medication and it doesn't work or has a lot of side effects, try another.
But if two or more medications don't work, it’s time to visit a specialized epilepsy center, he says. It could be that the dosage of the medication needs to be adjusted, he says.
Or the specialist may perform imaging tests of the brain to find out where the seizures are coming from, Shinnar says. "If the location doesn't involve control of speech or motor functions, we will try to surgically remove it."
A major strength of the study is that it followed people for 40 years, says Marc Nuwer, MD, a neurologist at the University of California, Los Angeles. Previous studies only followed children for five or 10 years.
"This is excellent data because it reinforces our beliefs on epilepsy and death, and also on remission rates for childhood epilepsy," he tells WebMD.