Epilepsy is a common neurological condition affecting approximately 0.5% to 1% of children worldwide, making it the most frequent chronic neurological disorder in childhood. While many children with epilepsy lead full and healthy lives, parents often express concerns about life-threatening outcomes. In rare circumstances, epilepsy can pose serious risks, requiring a closer look at the factors involved.
Understanding Mortality in Childhood Epilepsy
The prevalence of active epilepsy in the United States affects about 456,000 children aged 17 and younger. Although most children with epilepsy have a good prognosis and a normal life expectancy, studies consistently show an increased risk of premature death compared to the general population. For instance, the overall mortality rate among children with epilepsy can be as high as 8.8 deaths per 1,000 person-years, which is notably higher than in children without epilepsy. In some cases, the mortality rate can be 7 to 22 times higher for children with epilepsy, particularly those with underlying neurological issues. It is important to note that many of these deaths are related to underlying conditions associated with epilepsy rather than the seizures themselves, especially in children with “complicated epilepsy”.
Specific Causes of Epilepsy-Related Death
Sudden Unexpected Death in Epilepsy (SUDEP) is a leading cause of epilepsy-related mortality, defining instances where a person with epilepsy dies suddenly and unexpectedly without another clear cause identified, even after autopsy. These deaths often occur during or immediately after a seizure, frequently while the individual is asleep. The incidence of SUDEP in children is rare, estimated to be around 1 in 3,000 children annually, or as low as 1 in 4,500.
Another serious concern is Status Epilepticus (SE), which is defined as a seizure lasting longer than five minutes or a series of seizures without a full return to consciousness between them. This condition represents a neurological emergency that requires immediate medical intervention. If left untreated, status epilepticus can lead to severe consequences, including brain damage, organ failure, or even death. Mortality rates for children experiencing status epilepticus range from 3% to 15%, although some studies report a 30-day mortality as low as 1.8%. Prompt and effective treatment can significantly decrease the risks of complications and death.
Beyond direct physiological impacts, seizures can also lead to fatal accidents. Drowning is a particular hazard, with individuals with epilepsy being substantially more likely to drown while bathing or swimming compared to the general population. Many drowning incidents occur silently and rapidly in bathtubs or swimming pools. Falls during seizures can result in serious head injuries or broken bones. Other possible injuries include burns or cuts, underscoring the importance of safety measures in the home environment.
Key Factors Influencing Risk
Certain characteristics of seizures themselves can elevate the risk of mortality. Generalized tonic-clonic seizures (GTCS), which involve the entire body, are a notable risk factor for SUDEP. The frequency and degree of control over these seizures also play a role, with uncontrolled and frequent seizures increasing SUDEP risk. Seizures that occur during sleep, known as nocturnal seizures, further contribute to this elevated risk.
The underlying cause of a child’s epilepsy significantly impacts their mortality risk. Children whose epilepsy is associated with other neurological deficits or brain conditions, often termed “symptomatic epilepsy,” face a much higher risk of death compared to those with uncomplicated epilepsy. This includes conditions like cerebral palsy or other neurodevelopmental impairments, which can predispose a child to higher mortality.
Consistent adherence to anti-seizure medication (ASM) is also a factor. Inconsistent or missed doses can lead to uncontrolled seizures, which in turn increases the risk of SUDEP. Low levels of anti-seizure medication in the body are a modifiable factor that can increase the likelihood of status epilepticus.
The age at which seizures begin and the duration of living with epilepsy are also considered risk factors for SUDEP. Other co-existing health conditions can influence a child’s overall health and mortality risk. Developmental disabilities, for example, are recognized as a risk factor for SUDEP.
Strategies for Minimizing Risk
Achieving optimal seizure control is a primary strategy for reducing the risk of epilepsy-related mortality. Working closely with a neurologist to establish and maintain an effective treatment plan, often involving appropriate medication, is fundamental in this effort. Consistent adherence to prescribed medication is equally important, as missing doses can increase the risk of uncontrolled seizures and SUDEP.
Implementing specific safety precautions in the home environment can help prevent seizure-related accidents. Supervision during bathing is essential, and showers are often considered a safer alternative to baths, with recommendations to keep bath water shallow and bathroom doors unlocked. To prevent injuries from falls, cushioned flooring, corner guards on furniture, and safety gates on stairs can be beneficial. For nocturnal seizures, using baby monitors or seizure alarms can alert caregivers, and some parents may choose to sleep in the same room as their child.
Developing a clear emergency action plan for prolonged seizures is a proactive measure for all caregivers. This plan should outline when to administer rescue medication and specify the criteria for calling emergency services, such as a convulsive seizure lasting longer than five minutes or persistent breathing difficulties after a seizure. Sharing this plan with all individuals involved in the child’s care ensures a coordinated and rapid response during an emergency. Regular medical follow-ups with healthcare professionals are also important for ongoing monitoring and adjusting treatment as needed.