Sudden unexpected death in epilepsy (SUDEP) is rare in children, but what can cause a child with epilepsy to experience SUDEP?

Published: July 23, 2019 | Updated: October 13, 2022

When actor Cameron Boyce, star of the Disney Channelshows “The Descendants” and “Jessie,” died at age 20, his family said in a statement that his sudden death was due to a seizure during sleep. According to the family, the star was receiving ongoing treatment for the seizure disorder epilepsy.

The Centers for Disease Control and Prevention (CDC) states that nearly half a million children live with epilepsy in the U.S. How common is it for a person with epilepsy to experience sudden unexpected death in epilepsy (SUDEP)?

Many did not know that the young actor, who was in the movies “Grown Ups” and “Grown Ups 2” had epilepsy. Epilepsy is characterized by unpredictable seizures and can cause other health problems, according to the Epilepsy Foundation. A seizure is an electrical disturbance in the brain that can last from 30 seconds to two minutes. There are many types of epilepsy conditions/syndromes. Epilepsy can begin to appear at different ages, as young as infancy. Often, there is no known cause of epilepsy for patients. In some cases, it can be related to an injury or other condition, including a head injury, brain tumor, stroke, or infections such as meningitis. Some epilepsy conditions are easily treated and managed by medicines, and others may be severe and require surgery.

What is sudden unexpected death in epilepsy (SUDEP) in children?

SUDEP refers to deaths in people with epilepsy that are not caused by injury, drowning or other known causes, according to the CDC.

SUDEP is not common among younger children, according to researchers. However, it is still a concern for some children. Many cases of SUDEP, but not all, happen during or immediately following a seizure. What causes SUDEP is unknown, but possible reasons include:

• Breathing issue caused by seizure:A seizure may cause a person to have apnea, a pause in his or her breathing. These pauses can reduce the oxygen levels in the blood to a life-threatening level if they last too long. A convulsive seizure also may cause a person’s airway to be obstructed, leading to suffocation.
• Heart issues:A seizure may cause a dangerous, abnormal heart rhythm or even heart failure. This is rare.

• Other health issues and combination of issues:SUDEP can result from several causes or a combination of issues, including breathing issues and abnormal heart rhythm.

SUDEP risk factors in children

Are some children more at risk for SUDEP than others? According to the CDC, children with uncontrolled epilepsy or frequent seizures are the most at risk for SUDEP. Other risk factors may include:

• Early onset of epilepsy
• Developmental disabilities

What can parents do to help lower SUDEP risk in children?

“The most important thing parents can do to help lower SUDEP risk is to make sure their child adheres to his or her epilepsy treatment plan,” said Samir R. Karia, M.D., child neurologist with UofL Physicians – Child Neurology. “Avoiding seizure triggers, if they are known, and getting enough sleep also can help lower risk.”

Epilepsy care with Norton Children’s

Norton Children’s provides a comprehensive, multidisciplinary approach to treating epilepsy and seizures in infants, children and teens. Our board-certified and fellowship-trained team of neurologists and neurosurgeons use state-of-the-art diagnostic tools to understand your child’s seizures and epilepsy type. Our epilepsy specialists use their skill and experience to create customized treatment plans that minimize side effects, so your child can get back to being a kid.

The Norton Children’s Hospital Comprehensive Epilepsy Center is a Level 4 epilepsy center, the highest rating available from the National Association of Epilepsy Centers. Norton Children’s Hospital has held this designation since 2013.