Sudden unexplained death in epilepsy (1644)

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?

• American Epilepsy Society: www.aesnet.org
• Epilepsy Foundation of America: www.efa.org
• Children’s Wisconsin teaching sheets:
  • #1040 Seizures: Keeping your child safe.
  • #1994 Caring for a child with a seizure.
  • #3072 Traveling with a child who has epilepsy.