Swedish Caregivers Report Seizure Triggers, Preventive Strategies
Variety of methods used to try to avoid seizures in children with Dravet
Caregivers of children with Dravet syndrome in Sweden reported a number of factors, including fever, infections, physical activity, and tiredness could trigger a seizure in their child, according to a recent study.
Families implemented a range of strategies to avoid these triggers, including avoidance of warm weather and physical activity, or staying home from school to prevent infections.
The researchers noted that while some of these strategies “might reduce seizure burden,” they could also “adversely affect family functioning and [health-related quality of life.]”
“There is an urgent need for further studies investigating the effectiveness of different measures to control seizures,” the team wrote.
The study, “Caregiver reported seizure precipitants and measures to prevent seizures in children with Dravet syndrome,” was published in Seizure: European Journal of Epilepsy.
Dravet syndrome is a severe form of epilepsy marked by recurrent seizures. While these seizures can be unprovoked, studies have identified some common triggers, including fever, tiredness, or exposure to flashing lights.
But the strategies employed by Dravet caregivers to avoid a seizure haven’t been thoroughly or systematically explored.
To learn more, the Swedish research team investigated seizure triggers and caregivers’ preventive measures among 42 of the 48 known cases of Dravet in Sweden as of Dec. 31, 2018.
Of these 42 children, all but two had an identified mutation in the SCN1A gene known to cause Dravet and 23 were boys. The clinical features and treatment approaches for these 42 children were reported in another recent study.
Caregivers were interviewed about seizure triggers, how they avoided them, and their use of rescue therapies when a seizure did emerge.
The most common current or previous seizure precipitants were infections with fever (100%) or without fever (93%), physical activity (83%), tiredness (76%), and warm weather (69%).
Caregivers noted their child’s seizures were provoked by a median of seven triggers.
Infections without fever were more often a current trigger for younger children, born 2010-2018, than older children, born 2000-2009. Specifically, 20 of 24 younger children had that trigger compared with eight of 17 older children.
Likewise, a colder ambient temperature was more often a trigger in younger children (62%) than older children (19%).
Bright light was more likely a seizure precipitant for children with severe epilepsy (60%) than less severe epilepsy (21%), which was determined based on caregiver responses to the Epilepsy and Learning Disabilities Quality of Life (ELDQoL) questionnaire.
Seizure prevention tactics
Of 19 queried prevention techniques, caregivers reported using a median of eight of them. The most common currently or previously used techniques were avoiding warm weather (83%), physical activity (64%), infections (60%), and tiredness (60%).
Strategies to avoid infection included hand washing, avoiding contact with infected people, or staying home from school. Family members also implemented infection-avoidance strategies, including siblings staying home from school, increased hand washing, or isolating from the child with Dravet if an infection did occur.
The number of preventive strategies were significantly higher among children with severe Dravet. For those children, it also was significantly more common to avoid infections and crowds as preventive measures.
“It is likely that [caregivers] of children with a high frequency of seizures may decide to take more comprehensive seizure preventative measures,” the researchers wrote, adding “we cannot explain why precisely these measures were more commonly used.”
Preventing strong emotions and avoiding low temperatures were more common for younger children than older children.
About half of the children used personal cooling devices (52%) or air conditioners (45%) to maintain a lower temperature, while about a quarter (24%) had used preventive antibiotics or intravenous (into-the-vein) immunoglobulins to avoid infection. Both cooling devices and preventive treatments for infection were more common in younger children.
All children had used rescue medications to stop a seizure, and 37 were currently using them. Common medications included Diastat (rectal diazepam) and midazolam.
Frequency of rescue medication use to quickly stop an ongoing seizure ranged from zero to 120 times every three months, with more common use in younger children and those with more severe epilepsy.
Use of home oxygen, monitoring of oxygen levels, and seizure detection devices were among the other strategies employed to prevent and monitor for seizures.
Results overall, “indicate that caregivers identify a wide range of possible seizure precipitants and employ a range of measures to prevent/limit seizures,” the researchers wrote.
The team noted that since caregiver reports are subjective and rely on accurate recall, “there is a need for further studies employing robust prospective study deigns to confirm our results.”
Moreover, “interventional studies to investigate the effectiveness of measures to prevent seizures and how these measures affect [health-related quality of life] for the child and the family,” will be needed, the team concluded.