Cognitive Antiepileptic Drug Outcomes in Pediatric Localization Related Epilepsy
Principal Investigator: David W. Loring, PhD, Emory University
Goal: Determine changes in attention and other cognitive abilities associated with the three medications often used to treat the most common form of pediatric epilepsy and communicate the results to help parents and clinicians select the most appropriate therapyView project details
When a child is diagnosed with epilepsy, a parent’s first concern is to stop the seizures. But soon parents begin to worry about the possible side effects of antiseizure medications. In slowing down the brain activity that causes the seizures, these drugs, important as they are, can also affect other brain functions, including the ability to focus attention and absorb information.
Most of the current medications work equally well at stopping seizures. But little is known about how their cognitive effects may differ. So, doctors usually base their treatment decisions on other factors.
“There are no evidence-based guidelines,” says David W. Loring, PhD, professor of neurology and pediatrics at Emory University in Atlanta, Georgia.
Loring has launched a 12-center PCORI-funded study that will enroll 300 children, 6 to 12 years old, who are newly diagnosed with location-related epilepsy (LRE), the most common pediatric type. The researchers are randomly assigning children to treatment with one of the three most frequently used antiseizure drugs—levetiracetam, lamotrigine, or oxcarbazepine.
At the beginning of the treatment and 3 and 6 months later, the researchers will test attention, memory, and other cognitive functions important for children to perform well in school and life. The project’s aim is to find which drug best preserves those functions.
Research with a Personal Impact
Loring’s interest in this project isn’t just professional. His 21-year-old daughter, Rachel, developed epilepsy when she was 8 months old and experienced side effects—including cognitive problems—in response to several of the medications administered to control the seizures.
“Rachel’s epilepsy is something that I don’t always talk about publicly, but I acknowledged it in my PCORI application,” Loring says. With other funding requests, he notes, “I never would have said anything about it.”
Brandy Parker, a patient advocate who is one of Loring’s partners in the study, also brings a personal perspective to the research. She was diagnosed with epilepsy at age 15 and placed on each of several medications before ending up on valproate, which controlled her seizures but made her very tired. Unfortunately, some recently published studies report developmental delays, autism, or autism spectrum disorder in the children of mothers who took valproate while pregnant. Parker’s son Samuel, who is 10 years old, is on the autism spectrum.
“That’s the reason I’m so passionate about research,” she says. “I see what happened to Samuel and I think, what about these kids who are getting antiseizure drugs firsthand? How is it affecting them?”
Getting the Word Out
Disseminating information about research is one of Parker’s main objectives as patient advocate. “This PCORI-funded study is not only about research; we’re also educating those parents and children along the way…That’s a key thing for me,” she says.
Parker’s desire to educate and advocate for women and children with epilepsy led her to create an organization that focuses on women and children who have been diagnosed with epilepsy (www.MyEpilepsyStory.com). She will use the website, blog, and podcasts to provide updates from the study and other information to patients and parents.
She will also strive to counter reluctance of some epilepsy patients to participate in research. Parker notes that epilepsy patients not only lack information about the disorder but also have to face the stigma associated with it.
“People are leery about providing their own information to researchers but are even more protective when it comes to their children. That’s a huge problem we’re running into in the epilepsy community,” Parker says.
Loring explains that the children in the PCORI-funded study will be assigned numbers and their names won’t be attached to the data.
In her role as patient advocate, Parker plans to reassure parents and encourage enrollment in the study. She expects the results to inform families of newly diagnosed children in a way that wasn’t available to her family years ago.
“I’m very excited to be a part of this,” she says. “I can’t change what happened to Samuel, but I can change what happens in the future.”
Posted: December 20, 2013