These resources include the best available evidence about the course of Rett syndrome and its management as well as practical information about family associations, specialist clinical centres and links to relevant websites.
Children with developmental problems often experience sleep difficulties and in Rett syndrome there appear to be some specific sleep-related problems. However there has been little information on how common these sleep problems are and whether they are associated with any particular factors.
What we did
Using information from the Australian Rett Syndrome study, we examined the frequency of a range of sleep problems and any variation by agegroup or genetic abnormalities.
What we found
More than 80% of girls and women with Rett syndrome had sleep problems and these occurred most commonly among younger girls.
More than half of the girls younger than seven years old frequently woke up at night. Night waking was less common in older girls but still present in two fifths of those over 18 years of age. Older girls were less likely to experience night laughter but more likely to nap during the day and have seizures at night. Those with a large deletion, p.R294X or a p.R306C mutation were more likely to have sleep problems compared to those with other mutations. However those with a p.R270X, p.T158M, p.R106W or a p.R255X mutation were also more likely to nap during the day.
What does it mean
Girls and women with Rett syndrome experience more sleep problems than the general population. These can have a significant impact not only on the person affected but also on other family members. An assessment of the sleep pattern should be considered as part of the overall clinical management plan for Rett syndrome.
Further research is needed to compare different management strategies and when necessary the best medications to use for sleep problems.
For further reports and findings, see our publications list.