Extreme heat may worsen seizure risk in children with Dravet, study says
Parents report having adapt daily routines to keep their kids cool
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High temperatures and heat waves may make seizures more frequent, longer-lasting, and harder to manage in children and adolescents with Dravet syndrome, according to parents interviewed in a new study.
Parents described summer heat as a persistent seizure trigger that could dramatically change their children’s seizure patterns and force families to reorganize everyday life to keep them cool. Sudden temperature changes, such as moving between air-conditioned and hot environments or getting into a swimming pool, were also commonly reported as triggers.
To reduce the risk, families stayed indoors during the hottest hours, used air conditioning and other cooling measures, and closely watched their children for signs of overheating.
The study “highlights the aggravating role of heatwaves” on seizures and the steps families take to manage that risk, researchers wrote. “These findings inform clinical guidance for managing Dravet syndrome during extreme heat, and emphasize the need for further research into the prevention of heat-related seizures.”
The study, “Seizures in children with Dravet syndrome in extreme heat: A qualitative study of parental perspectives,” was published in Developmental Medicine & Child Neurology.
Parents report more frequent seizures in hot weather
Seizures in people with Dravet are particularly sensitive to increases in body temperature, and fever is a well-established trigger. Much less is known about the effects of high temperatures in the surrounding environment, despite parents frequently reporting a connection between hot weather and their children’s seizures.
With heat waves becoming more frequent and intense, a team led by researchers in Spain wanted to better understand what families affected by Dravet experience during periods of extreme heat.
They interviewed 19 parents (16 women) of children and adolescents living with Dravet syndrome in Spain. All the children, who ranged in age from 1 to 18, had mutations in the SCN1A gene, the most common genetic cause of Dravet syndrome. Parents took part in in-depth interviews about heat, seizures, and the strategies they used to protect their children.
A clear pattern emerged: seizures could become more frequent, long-lasting, and much harder to manage during hot weather.
“From one or two seizures a month, or none, to having one every day, or two, or three, or four. The change is brutal,” one parent said.
“‘Because it’s so hot, they last longer,” another said.
One parent reported being unable to control daily heat-related seizures even with five antiseizure medications.
Parents also described constantly watching for signs of overheating, such as flushed or unusually warm skin.
“You’re watching her all the time,” one mother said. “As soon as she gets a little red, you start to worry because you know it’s very likely that she’ll start having a seizure with the heat.”
Sudden temperature changes were also reported as triggers
Heat itself was not the only concern. Sudden temperature changes were also reported as triggers, including moving between air-conditioned spaces and the heat outside or from sunshine into a cooler environment.
That could make the strategy to cool down complicated. Several parents said that entering a swimming pool on a hot day could trigger seizures due to the sudden temperature change. Some families avoided pools and beaches, while others used wetsuits or heated pools to make the transition less abrupt.
“I can’t just put her in the water to cool her down suddenly, because the moment I put her in the water, a seizure is guaranteed,” one mother said.
Managing the risk often meant reorganizing daily life. Parents reported keeping children indoors during the hottest hours, using fans and air conditioning, dressing them in light clothing, and carrying cold water, ice, or damp clothes when they went out. Some used temperature sensors to detect early increases in body temperature.
You really weigh every step you take, whether a small minute of glory is worth everything that could come after.
Families also shifted outings to early morning or late evening.
“To be able to go out with our daughter, it has to be before 10 in the morning and then take advantage of 10 [to] 11 at night and let her sleep in her stroller during a nighttime walk. The rest of the day is spent at home,” one mother said.
These precautions could mean missing trips to parks, pools, restaurants, and other activities.
“You really weigh every step you take, whether a small minute of glory is worth everything that could come after,” one mother said.
The study relied on parents’ observations, meaning the researchers could not clinically confirm the temperature increases they reported or establish that environmental heat caused seizures. The findings also came from a small group of Spanish families and may not apply to everyone with Dravet.
Still, the findings can “help physicians counsel parents of children newly diagnosed with Dravet syndrome about seizure precipitants in the context of elevated temperatures, and to adapt existing rescue protocols to include responses to high temperatures,” the researchers wrote.
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