The clinical and sleep manifestations in children with FOXG1 syndrome.
Over half of FOXG1 kids have measurable sleep loss that also steals two hours of caregiver sleep each night.
01Research in Context
What this study did
Doctors asked 258 parents about sleep in kids with FOXG1 syndrome. They also gave the kids wrist watches that track sleep.
The team wanted to know how many kids had sleep trouble and how bad it was.
What they found
Half of the kids (a large share) had big sleep problems. The wrist watches showed short, broken sleep.
Parents lost about two hours of sleep each night while caring for these kids.
How this fits with other research
Paavonen et al. (2008) first saw the same a large share sleep trouble in kids with Asperger syndrome. Lee-Chin now shows the same rate in FOXG1 kids, but with real watch data, not just parent reports.
Barstein et al. (2021) used parent surveys in dup15q syndrome and also found high sleep problems. Both papers warn that seizures can change sleep scores, so always check epilepsy status.
Udhnani et al. (2025) found that anxiety and depression, not autism itself, cause poor sleep in adults. We do not yet know if mood plays the same role in FOXG1 kids.
Why it matters
If you work with FOXG1 kids, plan to treat sleep in both child and caregiver. Use a simple wrist actigraphy kit to get real numbers. Share the data with the sleep doctor and ask if melatonin or better bedtime routines could help. When you write reports, list caregiver sleep loss as a family priority.
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02At a glance
03Original abstract
FOXG1 syndrome is a rare neurodevelopmental disorder associated with severe cognitive dysfunction, autistic behavior, and early-onset hyperkinetic movement disorders. Patients have also been reported to experience sleep disturbances. However, these findings are mainly based on subjective caregivers' reports, and limited by small case numbers. Moreover, no studies using objective evaluation tools, such as actigraphy, have been reported. We analyzed the clinical and sleep manifestations of children with FOXG1 syndrome registered in the FOXG1 Research Foundation Patient Registry database. A total of 258 individuals with FOXG1 syndrome were included in this research. 132 (51.16%) had sleep disturbances. The more impaired of language acquisitions (absence of speech, OR: 3.99, 95%CI = 1.69-9.42, p = 0.002), hyperkinetic movement disorders (OR: 2.64, 95%CI = 1.34-5.20 p = 0.005) and feeding difficulties (OR: 2.81, 95% CI = 1.52-5.19, p = 0.001) were significantly associated with an increase in odds of sleep disturbance after adjusting for age, sex, and antiepileptic drugs. We also performed sleep studies on six individuals with FOXG1 syndrome using The Children's Sleep Habits Questionnaire (CSHQ), the Sleep Disturbance Scale for Children (SDSC), and 7-day data from Actiwatch. The Pittsburgh Sleep Quality Index (PSQI) and 7-day data from Actiwatch were also used to evaluate the sleep condition of their parents. The CSHQ scores revealed bedtime resistance, sleep onset delay, sleep duration, sleep anxiety, night-waking, and parasomnia. Sleep-wake transition disorders and disorders of initiating and maintaining sleep were also suggested by the SDSC scores. The children's actigraphy revealed short sleep durations, impaired sleep efficiency, longer wake after sleep onset, and frequent night-waking. All caregivers reported significantly higher PSQI scores, mildly declined sleep efficiency, and shorter total sleep duration. Sleep disturbances, especially in initiating and maintaining sleep, are common in individuals with FOXG1 syndrome and their caregivers. Sleep disorders in patients with FOXG1 syndrome and their caregivers should be investigated.
Autism research : official journal of the International Society for Autism Research, 2023 · doi:10.1002/aur.2916