A simple two-week sleep diary can turn a vague concern into useful information for the care team.
Key points to discuss:
- Record bedtime, estimated time asleep, waking episodes, final waking time and daytime naps.
- Note seizures or unusual movements, snoring, gasping, breathing pauses, reflux, pain, constipation and overnight care.
- Include medicines and their timing, illness, menstrual cycle where relevant, and changes in routine.
- Record the effect on daytime alertness and on family wellbeing.
- Bring the diary to primary care, neurology or sleep appointments.
Sources:
- Consensus care guidelines: https://pmc.ncbi.nlm.nih.gov/articles/PMC7488790/
- The Kids Research Institute publications on Rett sleep: https://rett.thekids.org.au/our-research/publications/
Important: This post provides general information, not individual medical advice. Care and treatment must be personalised by qualified healthcare professionals. If you are worried that someone is seriously unwell, use your local urgent or emergency service.
Using a sleep diary to understand Rett sleep problems
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Important: Experiences shared by members are for support and information only and should not replace advice from a qualified healthcare professional.
Important: Experiences shared by members are for support and information only and should not replace advice from a qualified healthcare professional.