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(Abst. 2.451), 2018

Nocturnal Seizures and Sleep Variability in Children and Young Adults with Dravet Syndrome
Authors: Emily Golbeck, Lurie Children's Hospital of Chicago and Anne T. Berg, Ann & Robert H. Lurie Children's Hospital of Chicago
Content: Rationale: Children with Dravet Syndrome (DS) experience seizures during and surrounding sleep. Nocturnal seizures affect the quality and amount of sleep children and their parents get. We surveyed parents of children with DS to determine frequency and types of seizures during sleep and the impact of poor sleep on other areas of daily function. Methods: A web-based survey was designed with substantial input from parents of children with DS in order to reflect the range and severity of morbidities experienced by their children. These included sleep, fine and gross motor, behavior, communication, and others. Participants were recruited at the annual Dravet Syndrome Foundation (DSF) meeting (July 19-22) through a formal presentation and the distribution of flyers. The DSF also posted a link to the study website on their Facebook page and website. Parents who completed the electronic informed consent procedure then logged into the website and completed all or parts of the survey. Responses were collected and stored in CLIRINX ©, an online clinical trial management system. Descriptive and bivariate analyses were performed in SAS Enterprise©. The study was approved by the Lurie Children’s IRB. Results: 92 parents of children with Dravet Syndrome (53, 58% female) consented to the study, and 66 completed the seizure and sleep sections.  35/66 (53%) parents reported that their child with DS had seizures during sleep, including 7/21 (33%) 0-4 year-olds, 11/18 (61%) 5-9 year-olds, 3/11 (27%) 10-15 year-olds, and 14/16 (88%) >16 year-olds (Figure 1).   Of those who reported seizures in sleep during the past month, 91% reported seizures at least once a week and 25% reported seizures 6-7 nights/week. On nights seizures occurred, 50% of children has only one seizures, 26% had 2-4 seizures and the rest had >=5 seizures/night.  Most children (84%) had nocturnal seizures lasting 10 minutes long.   Poor sleep and seizures also contributed to variability in other domains (Figure 2). Specifically, parents reported variability in gross and fine motor functions, communication, and behavior in association with poor sleep and increased seizures. Conclusions: Seizure frequency disrupts sleep in a large proportion of children with Dravet Syndrome.  Disrupted sleep, affects physical, emotional, psychological and intellectual abilities and may contribute to the burden and severity of morbidities seen in children with early life developmental disorders such as Dravet syndrome.   Funding: This work was supported by the Stanley Manne Children’s Research Institute and Ann & Robert H. Lurie Children’s Hospital of Chicago under the Precision Medicine Strategic Research Initiative and by the Dravet Syndrome Foundation.
Figure 1
Figure 2