- Children living with epilepsy have a higher death rate than children without epilepsy.
- Children who just have seizures are at a lower risk than children who have epilepsy and other neurological disorders, and deaths are usually not related to seizures.
- SUDEP, Sudden Unexpected Death from Epilepsy, is rare in children.
Seeing your child have a seizure is frightening. Many parents fear that their child could die during a seizure. The doctor may have tried to reassure you by telling you that children who are generally healthy will not die as a result of epilepsy. Is that true? What is the real story?
Studies of large numbers of children with epilepsy may help you relax. Many earlier studies of death in epilepsy included mostly adults. It appears that the results and the risk factors for children may be quite different.
The Nova Scotia study
One of these studies is called Death in Children with Epilepsy: A Population-based Study. "Population-based" means that the researchers investigated everyone in a certain group, not just a sample of them. In this study, the population was all the children who developed epilepsy in the province of Nova Scotia, Canada, from 1977 to 1985. It was possible to identify all of these 692 children because Nova Scotia has a government-funded health system and all EEGs of children are interpreted at one medical center. As a result, the group studied included children with all types of epilepsy and difficulties ranging from mild to severe.
Almost all of the children were followed up. Most (even those who no longer needed treatment for epilepsy) could be tracked for well over a decade. Of the 692 children, 26 (3.8%) died for any reason in the 1980s or 1990s. The researchers looked for the cause of each death and compared the rate of death to the rate for other children of the same birth year and sex in Nova Scotia.
Overall, the children with epilepsy were more than five times more likely than other children to die within 15 to 20 years of the diagnosis. That doesn't sound like good news, but the doctors found large differences that should reassure most children and their families.
The differences concern the type of epilepsy the child has and whether there are other neurological problems in addition to seizures. The researchers divided the children with epilepsy into three groups according to what type of seizures they had.
One group had almost exclusively absence seizures. There were 97 children in this group, 14% of the total. Only 1 of these children died, and that was by suicide at age 18.
The largest group contained mostly children who had partial seizures, which start in one part of the brain. In a minority of these children, the partial seizures sometimes spread over all the brain, producing secondarily generalized tonic-clonic (grand mal) seizures. A smaller number of children in this group had primary generalized tonic-clonic seizures, which begin on both sides of the brain at once. From this group of 510 children, 12 (2%) died.
The third group included 85 children with secondarily generalized epilepsies that involved seizures of other types, including infantile spasms and astatic, myoclonic, or tonic seizures. From this group, 13 (15%) had died by 1999.
Obviously the rate of death was higher in the third group, but the doctors who performed this study found that another factor was much more important than the type of seizures that a child had. This most important factor was whether the child had other neurological disorders. Most of the deaths were not the result of seizures. Instead, they were related to serious disorders that interfered with function. Within the three seizure-type groups, the researchers identified 101 children (15% of all the children with epilepsy) who had these other neurological problems. Of these 101 children, 22 died.
A common example of this kind of disorder is severe cerebral palsy in which the child is unable to sit up without support and may also have problems with swallowing. These children may inhale food or fluids (called aspiration) and then develop pneumonia. They also frequently have epilepsy, so they would be included among the children studied. Of the 26 deaths in the study, 14 were caused by aspiration with pneumonia.
After eliminating the 22 deaths from other severe neurological problems, the researchers found that the rate of death for the children with epilepsy who did not have any such disorders was the same as the rate for children without epilepsy. This conclusion means that if a child has a diagnosis of epilepsy but no other serious neurologic disorders, the doctor and the parents can be confident that the child's chances of dying as a result of the epilepsy are close to zero. This holds true regardless of whether the seizures can be well controlled. The study also showed that having epilepsy as a child does not make people more likely to die of other causes.
The Dutch study
A study in the Netherlands followed 472 children whose epilepsy was newly diagnosed between 1988 and 1992. The results were quite similar to the results of the Nova Scotia study. After 5 years, the overall rate of death for these children was 7 times higher than for other children of the same age, but all 9 of the deaths occurred in the group of 144 children whose epilepsy was related to other neurologic disorders. All the children who had epilepsy without other neurologic problems survived and the researchers concluded that their risk of dying was no greater than the risk for children without epilepsy.
Is "SUDEP" a threat for my child?
You may have heard or read about "SUDEP" (Sudden Unexplained Death in Epilepsy), in which a person with epilepsy who appears generally healthy dies suddenly (often in bed) without any obvious cause. Neither the Nova Scotia study nor the Dutch study found any cases of SUDEP in the children and teenagers they followed, and those researchers concluded that it is quite rare in these groups.
A study in the Canadian province of Ontario examined the cause of all sudden deaths between 1988 and 1998 among those under 18 years of age who had a history of epilepsy. These researchers reported finding 27 cases of SUDEP in this large province during that period. Slightly more than half were in children whose epilepsy was a symptom of some other neurologic problem, and nearly all had a reported history of generalized convulsive seizures. (There were a few in which the type of seizures was not known.) This total may look alarming, but the authors of the article pointed out that the rate of SUDEP derived from this number is many times lower than the rates reported in studies that are not limited to children. So even this study should be reassuring to parents of most children with epilepsy.