Parents describe their experiences of sleep problems in Cornelia de Lange syndrome
Sleep in Cornelia de Lange Syndrome
Overall findings from research studies suggest that between 5 and 7 out of 10 individuals with Cornelia de Lange syndrome have a sleep difficulty. Research suggests that sleeping difficulties may be no more common in Cornelia de Lange syndrome than in individuals with intellectual disabilty without Cornelia de Lange syndrome.
The most common problems are difficulties settling down to sleep (approximately 26% of individuals) and waking problems, such as waking in the night or early waking (31% of individuals).
Sleep difficulties have not been linked to self-injurious behaviours in Cornelia de Lange syndrome.
How long does it take for indiviudals with Cornelia de Lange syndrome to fall asleep?
Only one study has looked at how long it takes individuals with Cornelia de Lange syndrome to fall asleep and how often individuals wake up. These averages will not represent every child with Cornelia de Lange syndrome.
Average time to sleep onset was 27.0 minutes (+- 17.6 minutes); however of those with reported sleep onset difficulties this was 37.8 mins (+- 16.4 min).
How often do individuals with Cornelia de Lange syndrome wake up?
The average number of night time awakenings in children was 1.5 overall (2.1 in those with stated sleep maintenance problems). The average number of night awakenings in adults was 0.7 overall (1.5 in those with reported sleep maintenance problems).
Further information:
For more information on the nature of sleep in children with intellectual disability, and what can be done to reduce or improve sleep problems, click here to read Cerebra’s guide.
For useful tips on how to address some of the sleep disturbances common in Cornelia de Lange syndrome click here.
If you want help and advice on sleep issues in Cornelia de Lange syndrome click here.
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Original Research Article: Health and sleep problems in CdLS (2008)