When anti-seizure drugs no longer help, children with epilepsy often need surgery, but a new study has found that they face barriers to treatment and often wait more than a year for the surgery.
The UCLA study found that, on average, children had had seizures for more than five years before they had surgery. Parents described confusion over the disease and its medications, insurance obstacles and difficulty finding the right doctors, researchers said.
“Children with drug resistant epilepsy should be evaluated at a comprehensive epilepsy center expeditiously in order to conduct a comprehensive evaluation to determine the most appropriate treatment, including, but not limited to surgical treatments,” said the study’s first author, Christine B. Baca, an assistant professor in residence of neurology at UCLA.
Researchers interviewed 37 parents of children who were under 18 at the time of their surgery at UCLA, between 2006 and 2011.
About two-thirds of children in the study had one or more seizures daily and nearly half had tried three or more anti-seizure drugs.
After two anti-seizure drugs haven’t worked, children should be referred to an epilepsy center for a surgical evaluation, but two-thirds of families in the study waited more than a year for that referral.
Parents described the period before for surgery as a scary and confusing time.
“We’ve been bouncing around hospitals for four to five months,” one parent told researchers. “Not that the care was poor, but there’s a point where it surpasses the local specialty.”
Another child was subjected to a string of medications before being referred to surgery, her parent said.
“When the medications continued to fail and we were on number four and then number five and none of it was working, her seizures were getting worse, her behaviors worse,” the parent told researchers. “Some days all she did was seize and sleep. We kept trying more medications. Nothing was helping our daughter.”
Going forward, Baca and her team plan to develop interventions that will help children with epilepsy get care sooner.
One in 26 Americans will develop epilepsy in his or her lifetime, while an estimated three million Americans and 65 million people worldwide currently live with epilepsy. About half of epilepsy cases first occur during childhood, Baca said.