Hanover family featured in PBS documentary about epilepsy
Lili Gilmore's parents are constantly on edge, waiting for the next seizure to take hold of their daughter's brain and send her into an epileptic episode.
For nearly 15 years, Natalie and John Gilmore have watched their daughter have five types of seizures. They've watched her try endless combinations of medications to attempt to control those seizures. They've spent countless weekends trekking from West Manheim Township to New York City to see doctors to find something that might help their only child get better.
"Your child rides this roller coaster of getting better and getting worse," Natalie Gilmore said. "I don't think any of us could let our guard down. You don't know when the next one is around the corner."
Lili has a rare form of epilepsy called Lennox-Gastaut syndrome. It affects between 2 percent and 5 percent of childhood epilepsy cases, according to the Epilepsy Foundation.
Gilmore said this developed a few years after Lili was diagnosed with infantile spasm syndrome at 6 months old. She's now 15.
"We knew there was a possibility it would develop into Lennox-Gastaut," she said. "She has global delays and will probably have lifelong seizures."
Children usually have milestones they reach at certain ages like walking and talking. Global delays are developmental and intellectual delays between birth and 18 years old that hold back some children from reaching these milestones.
The documentary, produced by Twin Cities PBS, focuses on the treatment options that are available to patients with epilepsy. 'Seized': Lili is one of four people featured in a brand new Public Broadcasting Service documentary called "Seized: Inside the Mystery of Epilepsy." The documentary will air at 4 p.m. Sunday on WITF. It is also available online.
One patient has surgery to implant a sensor into her brain that emits electrical impulses when it detects a seizure may happen. Another developed epilepsy after coming home from the Iraq War, where he suffered brain trauma. He's treated it with multiple medications.
Because there isn't a lot of information on epilepsy, doctors have worked for years to research the causes and find whether there's a genetic link to the neurological disorder.Epilepsy: About 3 million Americans have some form of epilepsy, according to the Centers for Disease Control and Prevention (CDC). It is a neurological disorder that's diagnosed after people have two or more seizures.
Epilepsy can affect anyone at any time, too, according to the CDC. It can strike at any age, at any time. For one in three patients, it can be uncontrollable.
Dr. Andrew Cole, a neurology professor at Harvard University and director of Massachusetts General Hospital Epilepsy Service, said cannabidiol oil (CBD) is much more purified than regular medical marijuana that would be smoked by some other patients. Cole was featured in "Seized" as an expert on epilepsy and treatment options. Treatment: Lili and one other person in the documentary tried multiple combinations of medicines to treat their epilepsy. Both were also part of the first 30 chosen for a cannabidiol oil trial at New York University.
"It does not cause psychoactive changes," Cole said. "The important part is that this really is the first double-blind study about cannabidiol. This is rigorous and pretty blinded. The real efficacy of CBD remains to be determined."
"There's just so much we don't know about epilepsy," she said. Learning: Gilmore said watching Lili grow and develop has been a learning experience.
However, Gilmore said she enjoys her time with her daughter and the time the producers spent with her family while filming "Seized."
"I think they do a really good job about showing how much we don't know," she said. "They really show how different their stories are. There's a lot of misconceptions about epilepsy, and this gives you a good basic foundation for what seizures are."
Gilmore said she hopes people will watch the documentary and realize that it can affect anyone at any time.