What patients and families need to know
Sudden Unexpected Death in Epilepsy (SUDEP)
Sudden Unexpected Death in Epilepsy (SUDEP) is defined as the death of a person with epilepsy who passes away without a clear explanation. The death is not known to be related to an accident or seizure emergency such as status epilepticus. When an autopsy is done, no other of cause of death can be found.
While work is being done to find out what causes SUDEP, numbers suggest that approximately 1 in 1,000 children with epilepsy die from SUDEP each year. The risk of a child dying from SUDEP is about the same as he or she would have from something like a car accident.
The cause of SUDEP is not known but deaths are thought to be associated with a seizure in time, usually a generalized seizure that most often occurs at night. Some experts think the mechanism is related to heart or breathing abnormalities. Children with uncontrolled generalized tonic clonic (GTC) seizures are at greatest risk for SUDEP. However, any family with children who have epilepsy can reduce their child’s risk of SUDEP by doing all they can to make sure their child’s seizures are controlled. Families can and should be active advocates by collaborating with their epilepsy care team. If your neurologist is not specifically trained in epilepsy (e.g. an epileptologist), you may want to seek consultation with an epileptologist if your child’s seizures remain uncontrolled.
Here at Children's National, Madison Berl, Ph.D., the director of research in Pediatric Neuropsychology, and William D. Gaillard, M.D., director of our Comprehensive Pediatric Epilepsy Program, have led a regional effort to increase knowledge about SUDEP and other conditions that can accompany epilepsy. Childhood Epilepsy Risks and Impact on Outcomes (CHERIO) began in 2014 when the mother of a Children's National patient who died from SUDEP met Drs. Berl and Gaillard at the American Epilepsy Society annual meeting and asked what she could do to help raise awareness of SUDEP at Children's National. She has since partnered with the doctors to support the CHERIO program, which continues to make strides in its mission.
For more information about SUDEP, watch the video below or visit these websites:
You may have recently heard about SUDEP, or sudden unexplained death in epilepsy, in the news. Learn more about who is at risk and how to keep your child with epilepsy as safe as possible.