Sudden Unexpected Death in Epilepsy (SUDEP)
If a person with epilepsy dies suddenly and no other cause can be found, it is called Sudden Unexpected Death in Epilepsy (SUDEP).
It is unclear exactly what causes SUDEP, but experts believe it may be related to patients having cardiorespiratory difficulties following a seizure.
Research suggests SUDEP in children is very rare.
In a study following a group of children with epilepsy for 20 years, the researchers found that the overall incidence of SUDEP was 0.1 children per every 1000 patient-years. Importantly, the researchers found that:
- For those children with a serious neurological handicap, the chance of death 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.
- The incidence of SUDEP in children has been recently re-evaluated utilising cohorts from Ontario, Canada and Sweden.
- The overall incidence was 1.1/1000 patient-years, similar to adult populations. This incidence is higher than the figure given above from earlier research.
Risk factors
The following suggestions may help reduce the risk of your child suffering from SUDEP:
- Preventing seizures is the most effective way to prevent epilepsy-related deaths, in particular SUDEP.
- Ensuring your child takes their medication every day and is compliant helps prevent seizures and therefore, may help reduce their risk of SUDEP.
- Nocturnal Supervision (e.g. sharing a bedroom, using a listening device).
- Using seizure alert devices.
Reducing risk
The following suggestions may help reduce the risk of your child suffering from SUDEP:
- Preventing seizures is the most effective way to prevent epilepsy-related deaths, in particular SUDEP.
- Ensuring your child takes their medication every day and is compliant helps prevent seizures and therefore, may help reduce their risk of SUDEP.
- Nocturnal Supervision (e.g. sharing a bedroom, using a listening device).
- Using seizure alert devices.
Seizure detection devices
There are increasingly available seizure detection devices based on a variety of biomarkers. With improved technology, this is a rapidly moving field. Although there are false alarms and the devices are not perfect in detecting all seizures, there is increasing data that certain wearable devices can frequently detect generalised tonic-clonic seizures.
Discussing seizure monitors and wearable technology with your doctor or epilepsy nurse may be helpful. For further information on wearable technology, visit Epilepsy Action.
Discussions about SUDEP
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. Information from the North American SUDEP Registry shows there is some risk for all epilepsy syndromes. Discussion and precautions are relevant to each patient with epilepsy.
Compliance with treatment and the best possible control of seizures is the best way of reducing the risk of SUDEP.