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.
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."
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.
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."
RENEE MONTAGNE, HOST:
This is MORNING EDITION from NPR News. I'm Renee Montagne.
LINDA WERTHEIMER, HOST:
And I'm Linda Wertheimer.
Today in Your Health: kids with epilepsy. There are a lot of them. In the U.S. alone, more than 300,000 children have a seizure disorder. And doctors are becoming increasingly aggressive about treating those electrical storms in the brain.
NPR's Jon Hamilton reports that change comes amid growing evidence that some seizures can cause lasting damage.
JON HAMILTON, BYLINE: Like a lot of two-year-olds, Barton Holmes has strong opinions about things like footwear.
BARTON HOLMES: Red shoes.
KEVIN HOLMES: You want to wear your red shoes?
HOLMES: Mm-hmm, yeah.
HAMILTON: Barton lives in Washington, D.C. with his dad, Kevin, his mom, Catherine, and his sister, Eaddy. She's four and ready for breakfast.
CATHERINE HOLMES: Eaddy, do you want to say the blessing before we eat?
EADDY HOLMES: Yeah.
HOLMES: (Singing) Oh, the Lord's been good to me and so I thank the Lord...
HAMILTON: Barton's breakfast will include mango coconut yogurt, some orange slices - he will decide he doesn't want - a vitamin and one very important medicine.
HOLMES: We also need to give you your medicine.
HOLMES: No (unintelligible).
HOLMES: First medicine, then the vitamin, OK?
HOLMES: No medicine for me.
HOLMES: That's right. What's that medicine for, Eaddy? Do you know?
HOLMES: Barton's epilepsy.
HAMILTON: Barton's epilepsy showed up one morning when he was about 16 months old. Catherine remembers that her son was crying as she left him with his new babysitter to go upstairs.
HOLMES: Suddenly, as I got to the top of the stairs I realized that it was deadly quiet. That he had gone from really crying to nothing. So I turned around and started coming back down the stairs and Carolyn, the babysitter, said, you need to come quickly.
HAMILTON: Catherine says it was obvious that something was very wrong with Barton.
HOLMES: She had him in her arms and he was convulsing. And his eyes were rolling in the back of his head. And his tongue was coming out and his lips were blue. And I grabbed him from her and I thought he was dying.
HAMILTON: The seizure was over in less than a minute. And by the time an ambulance arrived, Barton was back to his old self. Even so, he was taken to Children's National Medical Center so doctors could try to figure out what had caused the seizure. They didn't find anything. And a single seizure doesn't necessarily mean epilepsy, so Barton went home.
HOLMES: They made an appointment for six weeks follow-up. But they said if he has another one call us. And he did have another one and another and another.
HAMILTON: After the second seizure, the doctors put Barton on a drug called Keppra. And once they got the dose adjusted, his seizures stopped for several months. Then just a couple of weeks ago, Barton had another one. So on this morning, he's headed back to Children's.
HOLMES: Daddy drive? Daddy drive?
HOLMES: Is Daddy going to drive to the hospital?
HOLMES: Bart, you want to get your raincoat?
HAMILTON: Barton's doctor is William Gaillard, who runs the epilepsy program at Children's. Gaillard says doctors take childhood seizures a lot more seriously than they did when he was in medical school.
DR. WILLIAM GAILLARD: When I was trained, the general sense was that epilepsies were not necessarily a bad thing. My fellowship at NIH changed that view very much, when I saw what happened in adulthood that was not the case.
HAMILTON: Gaillard saw that some children with prolonged or frequent seizures grew into adults who had problems with thinking and memory. And studies have confirmed that epilepsy can alter the brain. So Gaillard says these days doctors tend to act quickly when they see a kid like Barton.
GAILLARD: You want to treat the child with medications or with therapy in order to eliminate the seizures and preferably to use a medication which is going to minimize side effects. So no seizures, no side effects is the mantra, and I think that's an appropriate one.
HAMILTON: Gaillard says that mantra has become easier to follow, thanks to new treatments. For one thing, he says, drugs introduced since the early 1990s have fewer side effects. Another advance has been a resurgence in the use of low-carbohydrate diets, which seem to change brain metabolism in a way that can help reduce seizures. Then there are new implanted devices that can prevent seizures by stimulating a nerve that leads to the brain. And Gaillard says parents and other caregivers can now carry an emergency kit that lets them administer a fast-acting drug to stop a seizure.
GAILLARD: It's like carrying an insurance policy around with you. This makes it easier for families to travel. It's easier for kids to get out and about. And I think they've gone a long way to improving quality of life both for children and for their families.
HAMILTON: Gaillard says for some children, the most effective treatment is an old one: surgery. Surgeons can often remove a bit of brain tissue that's responsible for a child's seizures. Gaillard says this approach can work if there's only one problem area and if removing it won't interfere with something like speech or memory.
GAILLARD: Epilepsy surgery is underutilized in this country. And that is the best chance at cure if the first round or two of medications is not effective.
HAMILTON: But for most kids, surgery isn't necessary. More than half will eventually outgrow their seizures. And in the meantime, their epilepsy can usually be controlled with drugs.
UNIDENTIFIED WOMAN: OK. Right here.
HAMILTON: That's Dr. Gaillard's goal for Barton Holmes who is with his family getting ready for his appointment.
HOLMES: You want to see the doctor?
HOLMES: Yeah. And say hello?
HOLMES: Yeah. And talk to him?
HAMILTON: Barton's father, Kevin Holmes, says he's ready to try whatever it takes to stop Barton's seizures. A nurse named Audrey Scully arrives and starts gathering information.
AUDREY SCULLY: All right. So Barton, can we have you stand on the scale, buddy?
HOLMES: Want to stand right there?
HAMILTON: By the time Barton leaves today, he will have a prescription for a second epilepsy drug. And the odds are good that doctors will be able to control his seizures.
But for about 30 percent of kids with epilepsy, existing treatments don't work very well.
Brandy Fureman, of the National Institute of Neurological Disorders and Stroke, says that's probably because epilepsy is not one disease. She says there are many different epilepsies, each with its own cause. Fureman says some evidence for this comes from recent genetic studies.
BRANDY FUREMAN: People can develop epilepsy as a result of mutations in proteins that we know are very important in controlling the activity level of nerve cells, and so different mutations cause different syndromes that are epilepsies.
HAMILTON: Still, other epilepsies may result from head injuries, a lack of oxygen at birth, tumors and strokes. And Fureman says some of these epilepsies may require treatments that are very different from anything available now. She says one new approach which has worked in mice involves transplanting a type of cell that reduces excessive electrical activity in the brain.
FUREMAN: 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.
HAMILTON: Without drugs or surgery. Fureman says another experimental approach involves devices that monitor the brain for abnormal activity.
FUREMAN: Some of these devices are actually designed to predict when the brain activity is headed toward a seizure and actually deliver stimulation that shuts down that seizure activity.
HAMILTON: Fureman says the emphasis on preventing seizures and the activity that precedes them is a response to recent research on brain development.
FUREMAN: The evidence suggests that even abnormal activity in the brain that doesn't lead to a seizure can still interfere with things like learning, being able to pay attention, being able to remember things.
HAMILTON: And that's not the outcome Catherine McEaddy Holmes wants for her son, Barton. She says epilepsy has had a big impact on her family. McEaddy, the four-year-old, worries a lot about her brother's seizures. The family has paid some big medical bills even though they insurance. And instead of a babysitter, they've hired a full-time caregiver.
Catherine says she knows her son's epilepsy means he will need extra supervision when he learns to swim. She knows he probably can't be an astronaut. But she says those are pretty minor limitations.
HOLMES: We have this precious child who's perfect. He has nothing wrong with his brain. And then he has these seizures that seem to be trying to mess it up. And we want to do whatever we can to make sure that we don't let the seizures stop him from having the life that we want him to have.
HAMILTON: Jon Hamilton, NPR News.
(SOUNDBITE OF MUSIC)
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