Sleep disturbance is one of the major co-morbidities that families living with Dravet Syndrome have to negotiate.
Sleeping difficulties have been shown to affect between 75% and 97% of individuals with Dravet Syndrome. This is far greater than the sleep problems reported by 30% of families with young children in the general population or with other epilepsies. Daytime sleepiness may also affect individuals with Dravet Syndrome.
Many caregivers also lack restful sleep due to the fear of life-threatening seizures in their child's sleep or sudden unexplained death in epilepsy (SUDEP) which leads to exhaustion and fatigue.
Effective management of sleep disorders and nocturnal (night-time) seizures is likely to improve quality of life for the child and family. In the video below, Dr Andreas Brunklaus talks about the impact that sleep issues can have both for the Dravet child/adult and the whole family and discusses the role of melatonin as a possible treatment.
The exact reason for the high frequency of poor sleep in Dravet Syndrome is currently unknown - many possible factors may contribute. What is clear, is that sleep problems can have a major negative impact on the quality of life of both individuals with Dravet Syndrome and their families. They can exacerbate behavior problems, impact on a child’s abilities to learn and and provoke seizures.
In the video below, Professor Paul Gringras, Chair of Sleep Medicine at King's College London and founder of the Department of Children's Sleep Medicine at Evelina, London, provides an overview of the latest thinking and approaches to managing sleep difficulties in Dravet Syndrome.