Expert’s Corner: Four ways epilepsy care is changing


On May 6, clinicians and families gathered at the 2017 Clavin Conference for Family Education in Epilepsy to discuss the latest information about this condition. A major theme that emerged at the conference was that epilepsy isn’t a one-size-fits-all condition — and seizure activity can change over time as young brains develop. Because children are one of the fastest-growing groups of Americans being diagnosed with epilepsy, keeping up with the latest in clinical care for epilepsy is crucial, says Phillip Pearl, MD, director of the Epilepsy Center at Boston Children’s Hospital. Here, he shares four recent trends in the field.

Changes in epilepsy terminology

Simple shifts in the way we describe epilepsy can help lift its stigma and keep children from being defined by their disease, says Pearl. Rather than referring to “epileptics,” clinicians should use “people with epilepsy.” Likewise, “anti-epileptic drugs” are now called “seizure medications” for the same reason.

Location, location, location

For decades, seizures were labeled as partial or generalized and as grand mal or petit mal. However, these definitions were too general to describe many types of seizures. Now, clinicians classify seizures based on where they occur in the brain, the amount of awareness the patient has during the seizure and other features of the seizure (such as whether it involves movement). For example, the term “focal” has replaced “partial” to describe seizures that start on one side of the brain. When it’s not clear where seizures originate, they’re labeled as unknown onset. Further subcategories depend on whether a child is aware or impaired during a seizure.

Symptoms beyond seizures

Many children with epilepsy exhibit classic signs of the condition, such as tremors, convulsions and loss of consciousness. But clinicians and parents should be aware of other, less obvious symptoms of epilepsy, which can range from subtle to dramatic. Depending on the region of the brain affected, patients might stare into space, feel confused, giggle uncontrollably, experience breathing difficulties, lose bladder or bowel control, or even vomit. It’s important to keep such symptoms in mind when evaluating a child for epilepsy, says Pearl.

A spectrum disorder

Although seizures remain a hallmark of epilepsy, experts now believe that the condition exists within a broad spectrum of other disorders. These include disorders that can affect all ages, from autism to Alzheimer’s. In addition, the considerable co-morbidities affecting individuals with epilepsy have shed light on the far-reaching manifestations of the disorder, including learning disabilities, psychiatric diagnoses (mood and anxiety disorders), and increased mortality. Due to considerable heterogeneity, this group of disorders is commonly referred to now as “the epilepsies” instead of epilepsy, explains Pearl.

Learn more about the Epilepsy Center and the 2018 Lennox-Lombroso Pediatric Epilepsy Conference.