Understanding Death in Children With Epilepsy

Abstract

Death in children with epilepsy is profoundly disturbing, with lasting effects on the family, community, and health care providers. The overall risk of death for children with epilepsy is about ten times that of the general population. However, the risk of premature death for children without associated neurological comorbidities is similar to that of the general population, and most deaths are related to the cause of the epilepsy or associated neurological disability, not seizures. The most common cause of seizure-related death in children with epilepsy is sudden unexpected death in epilepsy (SUDEP). SUDEP is relatively uncommon in childhood, but the risk increases if epilepsy persists into adulthood. Although the direct cause of SUDEP remains unknown, most often death follows a generalized convulsive seizure and the risk of SUDEP is strongly related to drug-resistant epilepsy and frequent generalized tonic-clonic seizures. The most effective SUDEP prevention strategy is to reduce the frequency of seizures, although a number of seizure detection devices are under development and in the future may prove to be useful for seizure detection for those at particularly high risk. There are distinct benefits for health care professionals to discuss mortality with the family soon after the diagnosis of epilepsy. An individual approach is appropriate. When a child with epilepsy dies, particularly if the death was unexpected, family grief may be profound. Physicians and other health care professionals have a critical role in supporting families that lose a child to epilepsy. This review will provide health care providers with information needed to discuss the risk of death in children with epilepsy and support families following a loss.

Mortality in infantile spasms: A hospital‐based study

“…Population‐based studies on mortality in childhood onset epilepsy, including early onset epilepsy, have noted neurologic impairment/etiology (remote symptomatic/complicated epilepsy) and/or refractory epilepsy as the strongest risk factors for mortality . In our study, although we found evidence suggesting that refractory epilepsy, moderate or severe developmental delay, and AED polypharmacy are risk factors for mortality, these factors failed to reach a conventional level of statistical significance in the adjusted analysis, which is in line with the results of the population‐based study on mortality in early onset epilepsy .…”

“…These studies examined the effects of a limited number of risk factors on mortality in IS, and the effects of other system comorbidities on mortality risk were not assessed. Factors such as having an identifiable etiology or refractory epilepsy have been reported to be the main determinants of increased mortality in the broader childhood onset epilepsy population …”

“…Most deaths (70%) in pediatric epilepsy are not seizure‐related but due to complications from underlying neurological disability . However, a prospective longer term (40‐year) follow‐up study of childhood onset epilepsy found seizure‐related deaths, including sudden unexpected death in epilepsy (SUDEP), to be more common, occurring in 55% versus non–epilepsy‐related mortality in 43% of patients .…”

Pregabalin adjunctive therapy for focal onset seizures in children 1 month to <4 years of age: A double‐blind, placebo‐controlled, video‐electroencephalographic trial

“…Nevertheless, although the optimal goal of epilepsy treatment is cessation of seizures or at a minimum significantly reducing seizure frequency, effectively managing seizure rate reduces the associated risks of epilepsy, including medical incidents, injury, and sudden unexpected death . The efficacy and safety findings from this randomized clinical trial therefore provide evidence of an alternative option in the treatment of pediatric patients with FOS.…”

Identification of multi-targeting and synergistic neuromodulators of epilepsy associated protein-targets in Ayurvedic herbs using network pharmacological approach

“…Population-based studies have shown that the risk of death is 10 times higher in case of children, compared to the general population (Donner et al, 2017). For the childhood epilepsy, complex interactions among underlying epileptic co-morbidities emerging in the developing young brain constitute the major treatment challenge (Wilmshurst et al, 2014).…”