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Bringing Awareness to SUDEP

Published on Oct. 18, 2023

Did you know on the third Wednesday in October every year, SUDEP Awareness Day is recognized by many across the globe? SUDEP is Sudden Unexpected Death in Epilepsy and according to the CDC, “…refers to deaths in people with epilepsy that are not caused by injury, drowning, or other known causes." Valley Children’s is proud to help bring awareness to this day and help our community recognize steps they can take to reduce this risk if they or a loved one suffers from epilepsy.  

Epilepsy Alliance America states one of the most important steps to understanding SUDEP is starting the discussion. In a 2016 survey, almost all caregivers and nearly 2 in 3 people with epilepsy said they worry about death from epilepsy or seizures. Almost half of the respondents said learning more about SUDEP could make a difference in how they approach seizure control. Valley parents Monica and Abel Ayala are a part of this group who want to help bring awareness to SUDEP. 

Our child has had epilepsy all her life and we never considered SUDEP to be a risk factor that would affect our family.” The Ayala’s, like so many families, never considered the odds of SUDEP in their household. “We went to bed like any other night only to wake up with our daughter Bridgette screaming that she could not turn her sister over. Our daughter Kim was seizing face down into her bed full of stuffed animals and pillows and was suffocating during her seizure. It had never been an issue or concern until that night. We are so grateful that we were here to help intervene or Kim could have easily been a victim to SUDEP,” said Monica.   

Here are some risk factors associated with SUDEP and steps you can take to reduce the risk: 

The main risk factors for SUDEP are: 

  • Uncontrolled or frequent seizures. 

  • Children with uncontrolled epilepsy or frequent seizures are at the highest risk for SUDEP. 

  • Early-onset epilepsy. 

  • Developmental disabilities. 

  • Generalized convulsive (also called tonic-clonic) seizures. 

Other possible risk factors may include: 

  • Seizures that begin at a young age.  

  • Many years of living with epilepsy. 

  • Missed doses of medicine. 

Steps you can take to reduce the risk of SUDEP:  

  • The first and most important step to reduce your risk of SUDEP is to take your seizure medicine as prescribed. 

  • If you are taking seizure medicine and are still having seizures, discuss options for adjusting the medicine with your neurologist. If seizures continue, consider seeing an epilepsy specialist (epileptologist), if you have not already seen one.  

  • Avoid seizure triggers if known. 

  • Talk to your physician about SUDEP and the risk factors you may have with it.  

  • Get enough sleep. 

  • Train adults and others caring for your child in the home aboutseizure first aid. 

Knowing the signs and talking to your neurologist about SUDEP are some of the best ways to be prepared. To learn more about SUDEP and to see more resources on how to be prepared in the event of a seizure, visit the links below.