There has been much recent discussion as to whether SUDEP exists as an entity in children. Two epidemiological studies have suggested this to be rare; however, the National Sentinel Clinical Audit of Epilepsy-Related Deaths (Hanna, 2002) in the UK found a possible 81 children of 791 total deaths over a twelve month period, although only the records of 22 could be reviewed in full. Many of us involved with complex epilepsy are aware of this apparent phenomenon occurring in younger as well as older children within the clinic, albeit infrequently (personal experience of 2-3/year). Although, of course, it appears a much rarer occurrence to the general paediatrician.

Much focus has been placed on risk factors for SUDEP – in adults the type of epilepsy has probably not been as relevant as continuing seizures. Studies have suggested that children with symptomatic epilepsy are at higher risk. A possible explanation of this higher risk is a relationship between epilepsy and an associated comorbidity, but it could equally relate to the reduced likelihood of seizure control. Emerging data suggests that it is ongoing seizures that may pose the greater risk. Children with a probable diagnosis of what are regarded as the more benign syndromes (e.g. benign epilepsy with centrotemporal spikes) have been reported as likely SUDEP. This supports an argument for treating such syndromes sooner rather than later, in view of their usually prompt response to anticonvulsant medication. It appears unlikely that children with only typical absence seizures are at risk.

A key question often posed by families and professionals, if a possible risk of SUDEP is discussed, is how do we prevent or guard against it. Of course this question is virtually impossible to answer with our current knowledge although ongoing generalised tonic clonic seizures do appear to be a risk factor. This would provide an argument for optimal seizure control, aiming for seizure freedom where possible, and emphasising the need for compliance with regular medication.

Often clinicians are reticent to discuss SUDEP with families, primarily because of concern about unknown risk factors, expressing the likelihood of risk, and being unable to give information of cause and how to prevent it. There is concern about frightening parents and children alike, which is probably more of an issue with the clinician than the families themselves. Often when a child first presents with a generalised tonic clonic seizure, a parent who has witnessed the event may already have experienced a feeling that they thought the child had died. Discussion of the possibility, and the apparent lower risk than is perceived, is often easier at the outset – at time of diagnosis – rather than when a child has been established on treatment. Discussion of such may also aid decision making as to whether treatment is warranted in the benign syndromes. Older children themselves may express the fear that they could die at any time they have a seizure. An explanation that the risk is actually low may alleviate rather than enhance anxiety in some individuals.

Reprinted with the permission of Epilepsy Australia-the national coalition of Australia epilepsy associations and Epilepsy Bereaved UK.