SUDEP Not as Rare as Once Believed, Could Cause 3% of Sudden Childhood Deaths


Over the last decade, more information has been discovered about sudden unexpected death in epilepsy (SUDEP), although there is still much learning to be done. While researchers initially believed that this condition was extremely rare, particularly in pediatric patients, a new study suggests that SUDEP could be responsible for up to 3% of sudden childhood deaths. According to Medscape, this statistic is over 3x higher than previously thought. Check out the abstract for the data, presented at the virtual American Epilepsy Society (AES) 74th Annual Meeting.

AES Annual Meeting Data

To analyze the prevalence of SUDEP, researchers sourced data from the Sudden Death in the Young Case Registry. Although this registry was initially used to track sudden infant death syndrome, as well as deaths caused by abuse, it now also tracks cardiac and epileptic issues. The data used included that from infants to late teens (17) over a 2-year period. Patients who had a history of epilepsy were considered to have died of SUDEP; however, those with status epilepticus were not included in the data.

Out of 1776 patients, 3% (53) were deemed as SUDEP. An additional 1% (18) were considered to have died as a mix between SUDEP and cardiac difficulties. Since prior estimates placed SUDEP deaths at around 0.5-1%, this new finding was especially surprising. Additionally, children who purportedly died of this condition were less likely to receive an autopsy than children who died of other conditions.

Demographic Differences

In addition to determining the prevalence of SUDEP, researchers also discovered that there were some racial differences. Although SUDEP is equally as common in boys and girls, Black children were more likely to die of this condition than white children or those of other ethnic backgrounds. Researchers believe this could be due to:

  • Less access to care
  • Socioeconomic instability
  • More uncontrolled seizures caused by issues with seizure management
Those between infancy and 1 year old, and those between ages 14-17, also died at a higher rate than others. Researchers believe it is more difficult to control and manage seizures in early childhood. Additionally, puberty and poor seizure management contribute to the fatalities in teenage years. Doctors urge patients with epilepsy to continue taking their medications and not drink alcohol while at college.

Finally, the study determined that many cases of SUDEP occur during sleep. If someone sleeps on their stomach, with their face in the pillow, their body might not remind them to turn their head and breathe.

Overall, while the study does bring new insights into SUDEP and its potential mortality rate, additional research is needed to validate these findings.

Sudden Unexplained Death in Epilepsy (SUDEP)

According to the Epilepsy Foundation:

SUDEP is the sudden, unexpected death of someone with epilepsy, who was otherwise healthy. In SUDEP cases, no other cause of death is found when an autopsy is done.

Each year, an estimated 1 in every 1000 individuals dies from this condition. In around 33% of fatalities, the person either experiences a seizure or shows signs or symptoms of a recent seizure. Doctors are still unsure exactly what causes SUDEP. Some estimate that apnea or irregular heart beats could trigger it. However, the CDC notes that risk factors include:

  • Alcohol use or abuse
  • Missing medicine doses
  • Seizures beginning at a young age
  • Grand mal seizures
  • Night monitors
  • Uncontrolled or frequent seizures

The best way to prevent SUDEP is to take control of seizures. Epilepsy can be managed with trigger avoidance, specialists, diet, and neurostimulation.

Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

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