BACKGROUND: 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.
METHODS: 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).
RESULTS: 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.
CONCLUSION: "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.