Sleep

Sleep in Cornelia de Lange Syndrome

Overall findings from research studies suggest that generally 55-72% of individuals with Cornelia de Lange syndrome experience a sleep difficulty.  Research suggests that sleep difficulties may be no more common in Cornelia de Lange syndrome than in individuals with intellectual disability without Cornelia de Lange syndrome.

This provided conflicting results as to why sleep disturbances occur, however studies suggest that 12-72% of individuals with CdLS have trouble going to sleep and staying asleep.

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.

Some studies have indicated that sleep disturbances may be linked to more behaviour regulation difficulties and attention difficulties in Cornelia de Lange syndrome.

How long does it take for individuals with Cornelia de Lange syndrome to fall asleep and how often do they wake up?

A study conducted in 2012, by Rajan and colleagues, 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).

The average number of night-time awakenings in children with Cornelia de Lange syndrome was 1.5 overall (2.1 in those with stated sleep maintenance problems).  The average number of night awakenings in adults with Cornelia de Lange syndrome 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.

If you want help and advice on sleep issues in Cornelia de Lange syndrome click here.