Sleep in Dravet syndrome: A parent-driven survey

•Sleep disturbances are a common occurrence in young people with Dravet syndrome.•Seizures are a common source of sleep disruption.•Parents often sleep with their children because of seizures.•Daily and rescue medications contributed to restlessness and drowsiness in many affected patients.•Standard sleep questionnaires do not capture concerns in individuals with epilepsy and developmental disabilities. To describe and quantify the nature and severity of sleep disruptions in young people with Dravet syndrome (DS) based upon parent report. Qualitative review of available pediatric sleep instruments with parent members of the Dravet syndrome Foundation led to the design of a series of questions customized to DS and other severe epilepsies. The questionnaire was administered as part of an on-line survey that reflected specific sleep-related concerns of parents of children with severe epilepsy. 76 parent-respondents completed the survey for their children-participants. Children’s median age was 7.5 years (IQR 4.7–15.3); 41 (54 %) were female. The majority of parents (70/76, 93 %) used some method to monitor children while sleeping; co-sleeping was the most common method (45/76, 59 %). Seizures disrupted sleep in 40/76 (53 %); 19(48 %) reported nocturnal seizures 3 or more nights per week. In addition, 58/76 (76 %) also reported non-seizure-related nocturnal awakenings with 30 reporting awakenings 3 or more nights affected per week. Young people with Dravet syndrome have frequently disrupted sleep secondary to seizures and other factors. Co-sleeping practices, medication effects, enuresis during seizures and other factors are not considered on standard sleep questionnaires. Current findings highlight the frequency of epilepsy-specific concerns and lay groundwork for sleep measures more appropriate for this population.