Sudden Unexplained Death in Epilepsy (SUDEP)

Alert: Call 911 if you have a medical emergency. 

What is SUDEP?

SUDEP is when a person with epilepsy dies suddenly.

Who is at risk for SUDEP?

People with epilepsy who:

  • started having seizures at a young age.
  • have a lot of seizures.
  • have had seizures for a long time.
  • developmental disabilities.
  • hard to control seizures requiring changes in seizure medication.
  • do not take their medicines as they are supposed to, including:
    • taking too much or too little.
    • not taking the medicine at the right time.
    • stopping a seizure medicine all of a sudden.

It is more likely with generalized tonic-clonic seizures (full body shaking).

How can I reduce the risk of SUDEP?

Seizure control is the best prevention.

  • Give the right dose of all medicines at the right time.
  • Follow-up with your child’s neurologist on a regular basis. Let them know right away if there are any changes in lifestyle or any other concerns.
  • Get physicals or well child checks with your primary care provider at least once a year.
  • Live a healthy lifestyle. Your child should:
    • exercise on a regular basis.
    • get plenty of sleep.
    • eat a well-balanced diet.
  • not drink alcohol, use illegal drugs, or take other people’s medicines.
  • Teach people who spend a lot of time with your child what to do for them during and after a seizure. This includes how to be safe when swimming and bathing.
  • Use a monitor to help family members know if a seizure happens at night.

What if my child misses a dose of medicine?

It is important to give medicines on time.

  • Give the dose right away, unless it is almost time for the next dose.
    • Give the next dose at least 4 hours later.
  • If it is less than 4 hours until the next dose, skip it.
  • Do not give two doses at the same time.
  • If a dose is missed or skipped, call your neurologist.

Where can I get more information about SUDEP and seizures?