Information only, not medical advice. Every child with PURA syndrome is different. Please talk to your child's own doctors and therapists before making decisions about their care. In an emergency call 999; for urgent advice call NHS 111. Our disclaimer.
Easy read In short
- Many disabled children find sleep hard. You are not alone.
- Tell a doctor about snoring, pauses in breathing or seizures at night.
- Keep a sleep diary for 2 weeks. It helps doctors and sleep services.
- A calm bedtime routine, at the same time each night, can help.
- You need sleep too. Ask for help, like a carer’s assessment.
Sleep, PURA syndrome and complex needs
If nights are hard in your house, you’re far from alone. The NHS says disabled children can have sleep problems for physical reasons, such as muscle spasms or breathing difficulties, and that children with some learning disabilities may find it hard to understand why and when they need to sleep (NHS).
Some things are more specific to PURA. MedlinePlus Genetics says babies with PURA syndrome can be very sleepy (hypersomnolent) and can have short pauses in breathing (apnoea) or slow breathing, and that these breathing problems usually go away after age 1. In a 2021 study of 142 people with PURA, about half had breathing difficulties as newborns, most often central sleep apnoea. Every child is different, so use this as background for conversations with your child’s own doctors, not as a guide to what will happen.
Things to tell your child’s doctor about
Some sleep problems have a medical cause that can be checked and treated. It’s worth telling your GP or paediatrician if you notice:
Breathing that stops and starts, gasping, snorting or choking noises, or loud snoring. These can be signs of sleep apnoea, which the NHS says needs treatment.
Possible seizures at night, such as jerks, stiffening or unusual movements. A short video on your phone can help the doctor. Always follow your child’s seizure plan, and see the NHS page on epilepsy.
Pain or discomfort that might wake them: reflux, constipation, needing a change of position, or feeling too hot or cold. Our reflux and constipation guide has questions to ask.
Being very sleepy in the day, or a big change in their usual sleep. The NHS says your GP can refer your child to a sleep specialist or psychologist if needed (NHS).
Keep a sleep diary
A diary for a couple of weeks can show patterns you can’t see when you’re exhausted: what time your child fell asleep, how often they woke, what helped, and anything unusual such as seizures, illness or a change of medicine. Cerebra’s sleep service asks families for two weeks of sleep diaries before one-to-one support (Cerebra).
If your child has seizures, our private seizure diary keeps a log on your own device that you can print for appointments.
Bedtime ideas families find helpful
There’s no single answer, and what works for one child may not suit another. The NHS suggests a calm, predictable bedtime routine at the same time each night, avoiding screens for 30 to 60 minutes before bed, a dim light if your child is afraid of the dark, and keeping night-time wake-ups as calm and boring as possible (NHS).
Many families of children with complex needs also use a picture or object routine (for example bath, pyjamas, story, bed), so the steps feel familiar even when words are hard. Contact and Scope both have practical sleep advice for parents of disabled children, and Cerebra has a free sleep tips booklet and sleep guide.
Beds, positioning and comfort
If your child can’t change position on their own, gets out of bed unsafely, or needs support to lie comfortably, ask their occupational therapist or physiotherapist for an assessment. They can advise on positioning at night and on equipment such as specialist beds or sleep systems. Only use positioning equipment the way your child’s therapist has shown you.
Specialist beds can be expensive. Some charities fund them: see our grants and equipment funding finder, which includes Newlife and others.
Medicines for sleep
Some children are prescribed medicine to help with sleep. That is always a decision for your child’s own doctor, who knows their other medicines and seizures. Please don’t give any sleep medicine or supplement, including ones bought online or abroad, without their advice.
Help for you
Broken nights over months or years are hard on anyone. You can ask your council for a carer’s assessment. The NHS says it may lead to short breaks, so you can get some undisturbed sleep (NHS). Our short breaks guide explains how to ask.
If your child needs care or supervision at night, include it on a disability benefit form. GOV.UK says the care part of DLA can include supervision at night (GOV.UK). Scotland has Child Disability Payment instead: see our benefits finder.
Cerebra’s Sleep Advice Service offers free one-to-one support for children aged up to 16 with a brain-related or neurological condition, which includes PURA syndrome. The Sleep Charity supports families more widely.
Questions families ask
My baby with PURA sleeps a lot. Is that expected?
MedlinePlus says babies with PURA syndrome can be very sleepy. Always mention it to your child’s doctors, especially if it affects feeding or you notice pauses in breathing.
Who can help with my child’s sleep?
Start with your GP, health visitor, community nurse or paediatrician. They can check for medical causes and refer you to a sleep clinic or specialist if needed. Cerebra’s Sleep Advice Service can also help families of children up to 16.
Can I get a specialist bed through the NHS or council?
Ask your child’s occupational therapist. Equipment is usually provided after an assessment, and how it works varies by area. If it isn’t available, some charities fund beds and sleep systems.
Sources
Checked 1 Nov 2026. Rules, rates and services change, so always check the latest version.
- https://www.nhs.uk/social-care-and-support/caring-for-children-and-young-people/how-to-care-for-a-disabled-child/
- https://medlineplus.gov/genetics/condition/pura-syndrome/
- https://europepmc.org/article/PMC/PMC8592566
- https://www.nhs.uk/conditions/sleep-apnoea/
- https://www.nhs.uk/conditions/epilepsy/
- https://www.nhs.uk/baby/health/sleep-and-young-children/
- https://contact.org.uk/help-for-families/information-advice-services/health-medical-information/common-concerns/helping-you-and-your-child-sleep/
- https://www.scope.org.uk/advice-and-support/help-disabled-child-sleep/
- https://cerebra.org.uk/get-advice-support/sleep-advice-service/
- https://thesleepcharity.org.uk/
- https://www.gov.uk/disability-living-allowance-children/eligibility
Print the checklist
Take our one-page “what to ask” list to the appointment: EHCP and school or nursery meetings.
This article is part of our guide to Charities & family support. See all family support listings →