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What Parents Need to Know About SUDEP – Sudden Unexpected Death in Epilepsy

Updated: May 24

Written by Chad Birt


Epilepsy affects up to 470,000 American children and about 11 million children ages 15 and under worldwide. The condition causes regular seizures that can be difficult to control, and are—in some cases— deadly. Most people with epilepsy live long, healthy lives, but the diagnosis is life-changing. As a parent, it’s normal to feel overwhelmed.


When a child is diagnosed with epilepsy, many pediatricians focus on explaining how to treat epilepsy and manage seizures, says Laura Masters, MD, a pediatric neurologist at Texas Children’s Hospital North Austin. While management is important, doctors often sidestep one crucial topic: sudden unexpected death in epilepsy, or SUDEP.


Though rare, the Centers for Disease Control and Prevention (CDC) estimates that SUDEP affects at least 1 in 1,000 people with epilepsy each year. Learning more about the condition could end up saving your child’s life. While there is no known way to prevent SUDEP, studies suggest there are factors you may be able to control to greatly reduce your child’s risk.


WHAT IS SUDDEN UNEXPECTED DEATH IN EPILEPSY (SUDEP)?

SUDEP is the death of a person with epilepsy where the cause can’t be determined.


“While all patients with epilepsy are at risk of drowning or choking to death, SUDEP is a separate, poorly understood occurrence,” explains Tyler Terrill, MD, a pediatric neurologist and the medical director of Children’s Health Neurology Prosper, in Prosper, Texas.

While SUDEP can happen anytime, it usually occurs following a seizure. “Most cases happen at night and without warning,” Dr. Terill says. “It can occur even when parents and doctors do everything right.”  He emphasizes that while the condition is rare, parents of children with epilepsy can educate themselves to minimize the risk as much as possible.


HOW COMMON IS SUDEP?

Epilepsy-related deaths in children are rare, and those caused by SUDEP are even rarer. In the U.S., SUDEP affects about 1 in 4,500 children with epilepsy in any given year. “It’s important to remember that 4,499 of 4,500 children won’t be affected,” says Deepak Lachhwani, MD, a staff pediatric epileptologist at Cleveland Clinic’s Epilepsy Center.


WHAT CAUSES SUDEP?

SUDEP is poorly understood, and researchers have yet to find a specific cause. Because most incidents happen at night, when no one’s watching, it’s hard to pinpoint the exact mechanisms. Most SUDEP-related autopsies show signs of slowed or arrested breathing, but the actual cause of death isn’t always apparent.

Dr. Masters points to several factors that may contribute to SUDEP:


  • Disrupted breathing. In some cases, seizures cause a communication breakdown between the brain and respiratory system, pausing or stopping breathing altogether. In other cases, a person’s airway can become physically blocked. SUDEP can occur if oxygen levels drop too low.        

  • Brainstem malfunction. The brainstem regulates autonomic functions, or involuntary processes like breathing, heart rate, blood pressure, and body temperature. “Some studies have shown that the brainstem may be affected over time in patients with epilepsy, and this may make them more susceptible to failure of these functions,” Dr. Masters explains.

  • Heart irregularities. Seizures can rarely cause the heart to beat irregularly or stop beating.


“Many patients who die from SUDEP likely have one or some combination of these factors,” Dr. Terrill says.

WHAT ARE THE RISK FACTORS FOR SUDEP?

SUDEP is a risk for anyone with epilepsy, but Dr. Terrill says that children with epilepsy caused by a severe genetic disorder are at a much higher risk. For example, children with Dravet Syndrome (a genetic form of epilepsy that causes treatment-resistant seizures) are 15 times more likely to die from SUDEP compared to kids with other childhood-onset epilepsies. Kids with Lennox Gastaut Syndrome (a severe type of epilepsy that affects 3%-4% of children with epilepsy) are 24 times more likely to die prematurely compared to other children with epilepsy, often due to SUDEP. 


Another common risk factor for SUDEP is having generalized tonic-clonic seizures (GTCS). Formerly called grand mal seizures, “these are the hallmark kinds of seizures that we think of in the movies, where someone is shaking uncontrollably,” says Laura Lubbers, PhD, the chief scientific officer at Cure Epilepsy. People with epilepsy who experience three or more GTCS per year are 15 times more likely to pass away from SUDEP compared to those who don’t have GTCS.


Having intractable epilepsy (seizures that can’t be completely managed with medication), convulsive seizures during sleep, or an epilepsy diagnosis at a very young age are also related to a higher risk of SUDEP.





   

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