Sudden unexpected death in epilepsy (SUDEP)

What is sudden unexpected death in epilepsy (SUDEP)?

Sudden unexpected death in epilepsy (SUDEP) is a rare occurrence in children and adults with epilepsy. SUDEP is said to occur when an apparently healthy child or adult with epilepsy dies unexpectedly and no clear reason for the death can be determined.

In most cases, an autopsy is required to rule out other causes of death.

The most common criteria used to determine whether a death is due to SUDEP are:

• the person has epilepsy, which is defined as recurrent unprovoked seizures
• the person died unexpectedly while in a reasonable state of health
• the death occurred suddenly and during normal activity (often during sleep)
• an obvious medical cause of death could not be determined at autopsy
• the death was not the direct result of status epilepticus (prolonged seizure)

What are the risk factors for SUDEP?

While SUDEP is a risk for anyone with epilepsy, some children and adults with epilepsy are at higher risk than others. The risk factors that have been associated with SUDEP include:

• generalized convulsive seizures (also known as generalized/ bilateral tonic-clonic seizures)
• generalized convulsive seizures which occur during sleep
• uncontrolled seizures
• sudden stoppage and/or sudden change in anti-seizure medications

Uncontrolled seizures and generalized convulsive (bilateral tonic-clonic) seizures at night are two of the greatest risk factors for SUDEP.

SUDEP affects one in 1000 children and adults with epilepsy every year. The risk is higher in children and adults with drug resistant epilepsy, and some specific epilepsies causing conditions such as Dravet syndrome.

It is believed that most cases of SUDEP happen during or right after a seizure, but exactly how SUDEP causes death is not well understood. Heart and breathing abnormalities occurring as a result of abnormal brain activity following the seizure are thought to lead to SUDEP.

What can I do to prevent SUDEP?

The best way to reduce the risk of SUDEP is to reduce the occurrence of convulsive seizures. Taking anti-seizure medications as prescribed is very important.

Suddenly stopping or changing anti-seizure medications is dangerous, as these can provoke seizures and increase the risk of SUDEP. Regular follow up with your child’s neurologist should be done. During your child’s clinic appointments with your child’s neurologist, discuss your child’s SUDEP risk and how to prevent it.

Seizure triggers should be avoided. Children and adults with epilepsy are encouraged to lead a healthy lifestyle, with regular physical activity and modifications that reduce stress and seizure activity.

If the seizures are not controlled by anti-seizure medications, then your neurologist will recommend other measures such as epilepsy surgery, the ketogenic diet and/or neuro-modulation with vagal nerve stimulation or deep brain stimulation. These non-pharmacological measures can help with seizure reduction, which will also contribute to reducing the risk of SUDEP.

SUDEP mostly occurs after a generalized convulsive seizure during sleep, so it is important to have someone at home who can respond in case your child has a seizure.

Some parents may choose to sleep with their child. This is often reassuring for parents in the short term. In the long term, both you and your child will eventually feel the need for some privacy. Other options are to use a baby monitor or to attach a noise device to your younger child or infant at night. This could be a wrist rattle or a bracelet or anklet with a bell attached to it. The noise will alert you to any unusual movements. Seizure alert devices can also be considered.

If you find your child having a seizure, it is important to ensure safety of the child. If they are having a prolonged seizure, you may give a prescribed rescue medication. After the seizure ends, put your child on their side (recovery position). If they have turned prone (on their stomach) during the seizure, they must be turned to the side, as there can be breathing problems with the prone position.

If they are not breathing normally after the seizure, call 911.

Family members of children with a high risk of SUDEP should consider getting trained in emergency resuscitation measures, including cardiopulmonary resuscitation (CPR).

If you wish to learn more about SUDEP and its prevention, the following are helpful resources:

• SUDEP Action: https://sudep.org/
• Danny Did foundation: https://www.dannydid.org/about-danny-did/