One in 8 children with epilepsy had at least one significant injury over the course of several years, with injuries occurring more often in those with intellectual disability or symptomatic generalized epilepsy (SGE), a new study shows.
The injuries were mostly preventable, said Carol Camfield, MD, who along with her husband and coauthor Peter Camfield, MD, are professors emeritus of pediatrics, Dalhousie University, Halifax, Nova Scotia, Canada.
“These injuries primarily came out of the blue,” while patients were doing normal activities of daily living, she said. “The only real way to prevent these injuries is to decrease seizure frequency.”
Interestingly, most injuries occurred years after seizure onset, which suggests a role for continued education.
The researchers presented their findings during the Child Neurology Society (CNS) 2014 Annual Meeting.
The researchers used the Nova Scotia population-based childhood epilepsy database (n = 692) for this analysis. All patients had new-onset epilepsy between 1977 and 1985.
They tracked down and interviewed 473 patients (a response rate of 79%). Of these, 12% indicated that since their diagnosis about 27 years earlier, they had sustained at least one injury as a result of their epilepsy that was severe enough to require an immediate trip to the doctor or dentist. They said they were surprised that this rate wasn’t higher.
Of the 473 patients, 16 had had two or more epilepsy-related injuries, and 10 had sustained three or more injuries.
About a third of the injuries (29%) were lacerations requiring sutures, 19% were fractures, 16% were broken teeth, 5% were burns, and 5% were concussions. A quarter represented other injuries, including three shoulder dislocations, one eye injury that caused permanent vision loss, two near-drownings, and one fatal drowning.
This death occurred when a mother in her late 20s had a seizure while in a swimming pool. Dr Carol Camfield stressed that while patients and families worry about mortality linked to epilepsy, this was the only death during a seizure for the total sample of 473.
Various factors played a role in the injuries. The study suggested that if patients had an intellectual disability (an IQ under 70), they were much more likely to be injured than those with normal cognition with epilepsy (17% vs 9%; P = .02).
Because those with intellectual disability are often the patients with intractable seizures, their higher rate of injuries is likely related to their epilepsy and not their intellectual capabilities, said Dr Peter Camfield.
The study also found that patients with SGE, such as West syndrome and Lennox-Gastaut syndrome, that have a high seizure frequency, were more likely than those with all other types of epilepsy to be injured (19% vs 9%; P = .005).
All but four of the injuries occurred long after seizure onset. “You can’t let your guard down,” commented Dr Peter Camfield. “It’s a poignant indicator that if you want to stop the injuries, you have to stop the seizures.”
The message from this new data is to “brace yourself” in terms of counseling families, he added. “It doesn’t look like there’s much value in restricting activities because if you’re going to fall and hurt yourself, it’s going to happen whether you’re walking down the street or playing hockey.”
However, while the injuries occurred during normal activities, several might have been preventable, including the drowning, the near-drownings, the burns, and possibly the fractures, noted Elaine Wirrell, MD, professor, neurology, and director, Pediatric Epilepsy, Mayo Clinic, Rochester, Minnesota, when invited to comment.
“We need to continue to remind families and children regarding water safety — do not bathe alone,” she told Medscape Medical News.
Dr Wirrell recommended other strategies for lowering injury risk, including vitamin D supplementation to ensure bone health and reduce facture risk, turning on cold before hot water to help prevent burns in the shower, and safety education surrounding stoves and open flames in patients with poorly controlled seizures.
Still, the overall low risk for injury in the study is “reassuring,” said Dr Wirrell. “This means that for the developmentally normal child without intractable epilepsy, which is about 70% of the kids with epilepsy, their risk is low, and we want to be sure not to overly restrict their activities.”
The fact that many injuries occurred years after presentation emphasizes the importance of ongoing education at each clinic visit, she added.
The authors have disclosed no relevant financial relationships.
Child Neurology Society (CNS) 2014 Annual Meeting.