"Emplotted Narratives" and Structured "Behavioral Observations" Supporting the Diagnosis of Willis-Ekbom Disease/Restless Legs Syndrome in Children with Neurodevelopmental Conditions.
Willis-Ekbom disease/restless legs syndrome (WED/RLS) seems to be a frequent cause of intractable chronic insomnia (ICI) but is under-recognized in children/adolescents with neurodevelopmental conditions (NDCs), as many patients do not have the ability to express the underlying "urge-to-move". In light of this, we aim to develop a protocol for behavioral observations supporting the diagnosis of WED/RLS.



We investigated 26 pediatric patients (age 1-16 years, median 8) with NDCs, ICI and evidence of familial WED/RLS employing (1) "emplotted narratives" for description of the various "urge-to-move" presentations and (2) self-description and "behavioral observations" during a "suggested clinical immobilization test" (SCIT).



Parental narratives reflected typical WED/RLS-related "urge-to-move" symptoms during day-, bed-, and nighttime in all patients. Fifteen out of 26 patients could describe the "urge-to-move" during the SCIT. Ten out of 26 patients, unable to describe their symptoms due to cognitive disabilities, showed patterns of "relieving-movements" upon observation. Sensory processing abnormalities were reported in all patients, with tactile sensitivities (26/26) (including shifted pain threshold) as the most common sensory domain.



"Emplotted narratives" and structured "behavioral observations" support recognition of familial WED/RLS associated movement patterns and provide a useful tool for the diagnosis of WED/RLS in children with NDCs in a clinical office setting.
Sleep/Wake-Behaviour Clinic & Research Lab, Division of Developmental Pediatrics, Department of Pediatrics, Faculty of Medicine, BC Children's Hospital, University of British Columbia, Vancouver, BC, Canada. oipsiroglu@cw.bc.ca.
Osman S
OS
Ipsiroglu
Sleep/Wake-Behaviour Clinic & Research Lab, Division of Developmental Pediatrics, Department of Pediatrics, Faculty of Medicine, BC Children's Hospital, University of British Columbia, Vancouver, BC, Canada.
Nadia
N
Beyzaei
Sleep/Wake-Behaviour Clinic & Research Lab, Division of Developmental Pediatrics, Department of Pediatrics, Faculty of Medicine, BC Children's Hospital, University of British Columbia, Vancouver, BC, Canada.
Mai
M
Berger
Sleep/Wake-Behaviour Clinic & Research Lab, Division of Developmental Pediatrics, Department of Pediatrics, Faculty of Medicine, BC Children's Hospital, University of British Columbia, Vancouver, BC, Canada.
Alexandra L
AL
Wagner
Sleep/Wake-Behaviour Clinic & Research Lab, Division of Developmental Pediatrics, Department of Pediatrics, Faculty of Medicine, BC Children's Hospital, University of British Columbia, Vancouver, BC, Canada.
Sophia
S
Dhalla
Sleepdreams Professional Sleep Consultants, Inc. and Capilano University, North Vancouver, BC, Canada.
Jennifer
J
Garden
Division of Biochemical Diseases, Department of Pediatrics, Faculty of Medicine, BC Children's Hospital, University of British Columbia, Vancouver, BC, Canada.
Sylvia
S
Stockler
D000293:Adolescent; D000067289:Behavior Observation Techniques; D002648:Child; D002675:Child, Preschool; D003937:Diagnosis, Differential; D005260:Female; D006801:Humans; D007223:Infant; D008297:Male; D033262:Narration; D065886:Neurodevelopmental Disorders / Q000150:complications* / Q000523:psychology; D010290:Parents / Q000523:psychology*; D012148:Restless Legs Syndrome / Q000175:diagnosis* / Q000209:etiology* / Q000523:psychology; D012189:Retrospective Studies; D012890:Sleep / Q000502:physiology; D014851:Wakefulness / Q000502:physiology
Attention deficit hyperactivity disorder; Iron deficiency; Periodic limb movements in sleep; Polysomnography; Sleep problem