LAUSR

Sleep is cited as a prominent concern by many caregivers of children with epilepsy. Few studies have examined this issue systematically. Caregivers of 11 toddlers (12-36 months old) were recruited from two academic Pediatric Neurology clinics and responses were compared to children without epilepsy (n=343). Caregivers responded to a novel questionnaire being developed for infants and toddlers. Two domains were analyzed (Caregiver/Child Behavior and Comfort Object/Bedtime Routine). The domain score equaled the sum of the scores for each item divided by the number of items answered. Items in the Caregiver/Child Behavior domain were: 1.“My child’s total sleep time and sleep routine are problematic for me”; 2.“I am frustrated by my child’s sleep problem”; 3.“I worry about my child’s health due to their sleep problem”; 4.“My child wakes up shortly after they have fallen asleep”; 5.“My child wakes up distressed in the middle of the night”; 6.“My child’s sleep is restless”; 7.“My child does not seem well rested during the day”; 8.“My child requires a parent/caregiver's presence to fall asleep (e.g. in the room, in the bed)”; 9.“My child moves their legs in a cycling pattern, or kicks and moves their legs excessively in the middle of the night”. Items in the Comfort Object/Bedtime Routine domain were: 1. My child requires a parent/caregiver's presence to fall asleep (e.g., in the room, in the bed)”; and 2.“My child requires the presence additional comfort measures (e.g., aromatherapy, noise machine, weighted blanket, music) to fall asleep”. The Caregiver/Child Behavior score was higher (worse) in toddlers with epilepsy (3.40; SD 0.72) compared with controls (1.94; SD 0.93) p< 0.0001. Yet, toddlers with epilepsy had lower (better) scores in the Comfort Object/Bedtime Routine domain (2.23; SD 1.25) compared with controls (3.20; SD 1.25) p=0.01. Sleep behavior is complex in toddlers with epilepsy and can lead to parental frustration and worry in comparison to toddlers without epilepsy. Further investigation into this relationship could provide opportunities for effective interventions to improve sleep and quality of life for children with epilepsy. NIH2T32HL110952-06