New study links heatwaves to increased seizures in Dravet syndrome
Interview study highlights parental reports of heat-related seizure triggers
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Parents reported that their children with Dravet syndrome experienced more frequent, longer, and more intense seizures during heatwaves, according to a qualitative interview study.
Parents described heatwaves, sudden temperature changes, water exposure, and even excitement during hot weather as common seizure triggers. Many said they reorganized daily routines and prioritized cooling strategies in an effort to reduce seizure risk for their children.
Cooling strategies used during heatwaves included wearing light clothing, staying in cool indoor environments, limiting outdoor activity, and, in some cases, giving fever-reducing medication.
What the findings could mean for managing Dravet syndrome
“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 researchers wrote.
The study, “Seizures in children with Dravet syndrome in extreme heat: A qualitative study of parental perspectives,” was published in Developmental Medicine & Child Neurology.
Dravet syndrome is a severe form of epilepsy marked by seizures that usually begin in the first year of life. Most cases are caused by mutations in the SCN1A gene, which are believed to disrupt normal brain signaling and contribute to seizures and other symptoms.
While seizure triggers vary from person to person, some are commonly reported, including hyperthermia (overheating). Children with Dravet syndrome are often sensitive to warm baths, fevers, and physical exertion.
However, whether prolonged environmental heat exposure, such as heatwaves, directly triggers seizures in Dravet syndrome remains unclear. As heatwaves become more frequent and intense in many parts of the world, researchers say understanding this risk is increasingly important.
How researchers examined heat and seizure patterns
To explore this question, researchers in Spain conducted in-depth interviews with 19 parents of children and adolescents with Dravet syndrome, ages 1 to 18, to better understand how heatwaves and high outdoor temperatures may influence seizure activity.
When the researchers analyzed the interviews, three main themes emerged: seizures linked to high temperatures, other triggers related to sudden temperature changes, and strategies families use to manage seizures during hot weather.
Parents said hot weather and heatwaves were major seizure triggers, often leading families to change daily routines to reduce risk. Many described high temperatures as a “consistent trigger,” particularly during summer months. Several parents said heatwaves created a constant sense of concern about their child’s stability.
“What happens when there are heat waves? The child has more epileptic seizures than usual,” one father said.
Parents also reported that many children struggled to regulate their body temperature, with some appearing unable to sweat and cool down effectively. Families said they often took immediate steps at the first signs of overheating — limiting activity, staying indoors, and closely monitoring symptoms — which affected daily life for both children and parents.
“You’re watching her all the time. 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,” a mother said.
Parents describe seizure patterns during heatwaves
During periods of extreme heat, parents reported noticeable increases in seizure frequency. Some said children who typically experienced one or two seizures per month began having daily episodes — sometimes two, three, or more in a single day. Parents also reported that seizures during heatwaves tended to last longer and be more intense, even when children were taking antiseizure medications.
Parents described small temperature changes as potential triggers. Moving from an air-conditioned car into hot outdoor air — or even stepping from the sun into shade — was considered high risk.
“It has always been with sun-to-shade or hot-to-cold changes that she’s had seizures… That temperature change is enough to provoke a seizure,” another mother said.
Parents also said entering a cooler pool or the sea appeared to trigger seizures, which they attributed to the sudden temperature contrast — even when gradual cooling methods were tried. As a result, some families said they avoided pools or beaches altogether.
“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 shared.
Our findings provide parental perspectives on how heatwaves and/or high ambient temperatures affect seizures in children with Dravet syndrome. These results can be used to identify seizure precipitants, assisting parents in managing their children’s seizures.
Heat alone was not the only concern. Parents reported that excitement, anticipation, and stimulating environments — such as parties, crowds, music, or bright lights — seemed to increase seizure risk when combined with high temperatures.
When temperatures rose, parents said preventing overheating became their top priority, regardless of social norms. Children were dressed in very light clothing, sometimes described as “almost naked,” to stay cool. Families said they left home prepared with cold water, ice packs, damp cloths, or spray bottles to help lower body temperature throughout the day.
Some parents used temperature sensors linked to mobile phones to detect early increases in body temperature. Many families limited time outdoors during hot weather by staying home during the hottest hours and going out only early in the morning or late at night, when temperatures were lower.
For some families, staying home felt like confinement, but they viewed it as necessary to protect their child. Parents noted this challenge was even greater in regions where high temperatures extend beyond the summer months, keeping families indoors for longer periods.
“To be able to go out with our daughter, it has to be before 10 in the morning and then… at 10–11 at night,” one mother explained. “The rest of the day is spent at home.”
Cooling strategies families use during extreme heat
Parents said they relied on fans, air conditioning, and closed blinds, and sometimes moved their child from room to room depending on where the house was coolest. Some families also sought out air-conditioned public spaces, such as shopping malls, as safer leisure alternatives, while trying to avoid sudden temperature changes they believed could trigger seizures.
When parents suspected overheating, many said they gave fever-reducing medication in an effort to prevent seizures.
“If we give him [paracetamol] when he has a fever… then we also give it to him when his temperature rises in the summer, and we avoid a seizure from the heat. It’s the same thing,” one mother said.
“Our findings provide parental perspectives on how heatwaves and/or high ambient temperatures affect seizures in children with Dravet syndrome,” the researchers concluded. “These results can be used to identify seizure precipitants, assisting parents in managing their children’s seizures.”
