Parent-reported sleep profile of children with early-life epilepsies

Title: Parent-Reported Sleep Profile of Children with Early-Life Epilepsies

Affiliation: University of Michigan Medical School, Ann Arbor, Michigan

Authors: Gita Gupta, Louis T. Dang, Louise M. O’Brien, Renée A. Shellhaas

Reference: Pediatric Neurology 2021;128:9-15

We thank Gita Gupta for providing us with a summary of their work.



What we did:

What was the source of our data?
We analyzed data collected by the Rare Epilepsy Network for this study. The Rare Epilepsy Network asked caregivers numerous questions, including those about sleep, by use of online questionnaires.

What were the goals of the study?
Our goal was to determine how common sleep concerns are for children with (primarily genetic) epilepsies, and what type of sleep concerns are the most common. We also wanted to see if there is an association with epilepsy type and frequency of sleep concern, and if there is an association between sleep concerns and nocturnal seizures.

What we found:

What was the age and sex of the children in the study?
Half of the children included in our study were younger than the age of 4 years and 7 months. The oldest child was 13 years of age. 56% of the children in our study were girls.

What type of epilepsy did the participants in your study have?
Epilepsy types included: Aicardi syndrome, CDKL5, Doose syndrome, Dravet syndrome, Dup15q syndrome, Hypothalamic hamartoma, Ohtahara syndrome, PCDH19, SCN8A, SYNGAP1, Tuberous sclerosis, and West syndrome.

How common were sleep concerns?
We found that a little over half (53%) of caregivers had a concern about their child’s sleep.

What were the most common sleep concerns?
The most common sleep concerns were frequent nighttime awakenings (157 of 350; 45%), difficulty falling asleep (133 of 350; 38%), and very restless sleep (118 of 345; 34%). 

Which children had the highest proportion of sleep concerns?
Sleep concerns were most common in children with dup15q syndrome (16 of 19; 84%).

How many children had nocturnal seizures? How many of those children had sleep concerns?
75% of children in the group had a history of nocturnal seizures. 56% of the children with nocturnal seizures also had sleep concerns.

Do sleep concerns have an association with nocturnal seizures?
There was an association between caregiver report of sleep concern and caregiver report of nocturnal seizures, but this association became weaker when adjusted for age and sex.

Was epilepsy type associated with presence of sleep concern?
No it wasn’t. Meaning, even though sleep concerns were more common in certain epilepsy types, sleep concerns were common among children with all epilepsy types.

Did the sleep concerns decline with age as would be expected in typically developing children?
Caregivers of older children also endorsed sleep concerns, unlike what would be expected in typically developing children.

What this means:

Sleep concerns are highly prevalent among children with early life epilepsies, and they are even more prevalent for children whose caregivers report nocturnal seizures. The sleep disorders appear to be pervasive throughout the early childhood years; however, the main sleep concerns that are endorsed by caregivers of children with early life epilepsies are similar to those of typically developing children. This could reflect a shared neurodevelopmental trajectory of sleep abnormalities and the epilepsy syndrome itself.

How we think this helps future research move forward:

Treatment of sleep disorders may present an opportunity to optimize epilepsy outcomes with relatively low-risk interventions and improve the quality of life for children with ELEs and their families.