Children's epilepsy resource for Families

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Sudden Unexpected Death in Epilepsy (SUDEP)

 

What is SUDEP?

If a person with epilepsy dies suddenly and no other cause can be found, it is called ‘Sudden Unexpected Death in Epilepsy” or SUDEP. [1]  It is unclear exactly what causes SUDEP, but experts believe it is probably related to patients having cardiorespiratory difficulties following a seizure. [2]

 

 

How common is it?

It may be confronting when you first find out about SUDEP, but reassuringly, research suggests SUDEP in children is very rare. [2]

 

In a study of a group of children with epilepsy [2]  who were followed for twenty years, the researchers found that the overall incidence of SUDEP was 0.1 children per every 1000 patient-years. Importantly, the researchers found that:

  • Neurologically normal children with newly diagnosed epilepsy do not face an increased risk of death over their next 20 years.
  • For those children with serious neurological handicap, the chance of SUDEP over the next 20 years can approach 25%, but death in these cases is usually caused by complications relating to neurological deficits, rather than seizures.

  

 

What are the risk factors for SUDEP?

  • When the age of epilepsy onset is less than 16 years. [3]
  • When the patient has had epilepsy for more than 15 years. [3]
  • Where the patient has frequent generalised tonic-clonic seizures.[3]
  • Where the patient has nocturnal seizures. [4]

  

 

 

What can you do to reduce the risk of SUDEP? 

The following suggestions may help reduce the risk of your child suffering from SUDEP:

  • Preventing seizures may be the most effective way to prevent epilepsy-related deaths, in particular SUDEP. Ensuring your child takes their medication every day helps prevent seizures and therefore, may help reduce their risk of SUDEP.
  • Some night-time supervision, such as sharing a bedroom, could be considered or discussed with your Doctor. [5]
  • Staying with your child for 15-20 minutes and watching them carefully after a generalised tonic-clonic seizure to make sure they are breathing normally may reduce their risk.
  • One possible preventative intervention may include seizure alerting devices but research information on the success of these is not yet available.

 

 

Key Message

While it may seem confronting at first, it is good to discuss SUDEP with your Doctor and to understand that it is very rare in children with a new epilepsy diagnosis or where epilepsy is well controlled.

 

As the child grows into an adult, if their epilepsy is long-standing the risk does increase. Compliance with treatment and best possible control of seizures is the best way of reducing risk of SUDEP.

 

 

 

 

Further information:

Don’t be afraid to ask your Doctor about SUDEP. If you would like to read more about SUDEP, you may find the following resources helpful:

 

www.sudepaware.org

 

www.epilepsy.com/sudep

 

www.epilepsyaustralia.net

 

www.sudep.org

  

 

 

 

The information provided on this page has been written by members of the PENNSW Website Editorial Committee.

This page was created on the 29th January 2015.

 

 

 


[1] Gayatri et al. (2010). Parental and physician beliefs regarding the provision and content of written sudden unexpected death in epilepsy (SUDEP) information. Epilepsia; 51: 777-782.

[2] Camfield. P. & Camfield, C. (2005). Sudden Unexpected Death in People with Epilepsy: A Pediatric Perspective. Sem Ped Neurol, 12:10-14.

[3] Shorvon & Tomson (2011). Sudden unexpected death in epilepsy. Lancet, 378:2028-2038.

[4] Lambers et al (2012). Epilepsia, 53(2): 253-257. Langan et al (2005). Neurology, 64: 1131-1133. Nashef et al (1995). Epilepsia, 36: 1187-1194.

[5] Langan et al. (2005). Case-control study of SUDEP. Neurology, 64: 1131-33.