Barton Holmes, 2, sits with his father, Kevin Holmes, and his mother, Catherine McEaddy Holmes, during an appointment at Children's National Medical Center in Washington, D.C.
Barton Holmes was 16 months old when he had his first seizure. "He was convulsing and his eyes were rolling in the back of his head," his mother, Catherine McEaddy Holmes, says. "His lips were blue. I thought he was dying."
The seizure ended in less than a minute. And by the time an ambulance arrived, Barton was back to his old self. Even so, doctors at Children's National Medical Center in Washington, D.C., where the family lives, kept him overnight while they tried, without success, to figure out what had caused the seizure.
When Barton had a second seizure 10 days later, doctors didn't hesitate. "They were very aggressive and wanted us to start medication immediately," Holmes says. So Barton, who is 2 now, began taking an antiepileptic drug called Keppra.
Barton cuddles with his father while they wait at the hospital.
Barton cuddles with his father while they wait at the hospital. Maggie Starbard/NPR
An aggressive response to a second "unprovoked" seizure is pretty standard these days, says Dr. William Gaillard, who is Barton's doctor and runs the Comprehensive Pediatric Epilepsy Program at Children's. And that's a marked change from the approach of just a few decades ago.
"When I was trained, the general sense was that [seizures] were not necessarily a bad thing," Gaillard says. But a growing body of research shows that even some seizures once thought to be benign can affect the brain, he says, and frequent or prolonged seizures can eventually cause problems with memory and thinking.
So the new mantra in treating childhood epilepsy is "no seizures, no side effects," Gaillard says.
Epileptic seizures are often compared to electrical storms in the brain. They can last for a few seconds or a few minutes and may cause convulsions, a loss of consciousness or just blank staring. More than 300,000 children in the U.S. have epilepsy.
In the past decade or so, researchers have begun to replace the term "epilepsy" with "epilepsies," says Brandy Fureman, a program director at the National Institute of Neurological Disorders and Stroke. She says this reflects a new appreciation that epilepsy is more than one disorder with more than one cause.
Scientists have known for a long time that head injuries, tumors, or a lack of oxygen at birth can all lead to epilepsy. But in recent years, they've also identified a range of genetic mutations that can lead to seizures by affecting the activity of nerve cells.
New brain imaging techniques have shown that even infrequent seizures can have subtle effects on a child's brain, Fureman says. One study found that seizures "can actually change the way language centers in the brain develop."
Epilepsy has made the Holmes family's life harder, but they are determined to have as normal as life as possible.
Epilepsy has made the Holmes family's life harder, but they are determined to have as normal as life as possible. Maggie Starbard/NPR
That sort of research is why Barton's parents are determined to stop his seizures. But it hasn't been easy. It took months for doctors to find the right dose of Keppra for Barton, Catherine McEaddy Holmes says. For several months he was seizure-free.
But in May, Barton had another seizure, Holmes says. So now he's taking a second drug called Trileptal.
Fortunately for Barton and kids like him, doctors now have more and better ways to prevent seizures, Gaillard says.
One major advance has been a series of new epilepsy drugs introduced since the early 1990s that have fewer side effects. Older drugs often left patients drowsy or feeling sedated.
Another recent advance has been the resurgence in the use of low-carbohydrate diets, including the high-fat ketogenic diet that was used in the 1920s and 1930s before anticonvulsant drugs came along. Scientists say these diets appear to change brain metabolism in a way that reduces seizures for some patients.
Then there are new implanted devices that send electrical signals to the vagus nerve, which runs from the abdomen to the brain. The device can dramatically reduce seizures, though it rarely stops them completely.
And for more than a decade now, doctors have been able to provide parents and other caregivers with an emergency kit that lets them administer a fast-acting drug to stop a seizure.
"It's like carrying an insurance policy around with you," Gaillard says. "This makes it easier for families to travel. It's easier for kids to get out and about."
For some children, though, the most effective treatment is an old one: surgery.
"Epilepsy surgery is underutilized in this country," Gaillard says, adding that it represents "the best chance at cure if the first round or two of medications is not effective."
Surgery isn't an option for all patients, though, Gaillard says. The approach can work if there's only one problem area in the brain and if removing the area won't interfere with something like speech or memory.
For about 30 percent of children with epilepsy, none of the existing treatments is adequate.
Eaddy Holmes, 4, holds her brother's hand as they cross the street. Sometimes she can't sleep because she worries he will have a seizure.
Eaddy Holmes, 4, holds her brother's hand as they cross the street. Sometimes she can't sleep because she worries he will have a seizure. Maggie Starbard/NPR
Fureman says one new approach that has worked in mice is different than anything previously tried. It involves transplanting a type of cell that reduces excessive electrical activity in the brain. "Cell therapy may be one way that we can very specifically target the region of the brain that is overexcited and quiet that area of the brain."
Another experimental approach involves devices that monitor the brain for abnormal activity. Some are able to predict when the brain activity is headed toward a seizure, Fureman says, "and actually deliver stimulation that shuts down that seizure activity."
Despite all the improvements in treatment, epilepsy can still take a toll on kids like Barton, and on their families.
Catherine McEaddy Holmes says her 4-year-old daughter Eaddy sometimes can't sleep because she is afraid her little brother will have another seizure. The family also has absorbed some big medical bills, even though they have insurance. And instead of using babysitters, they've now hired a full-time caregiver who knows what to do if Barton has a seizure.
It's all worth it, Holmes says, if it means Barton can do the things other kids do.
"We have this precious child who's perfect," she says. "We want to make sure that we don't let the seizures stop him from having the life that we want him to have."