If a child is struggling to breathe, is floppy or will not wake, or their skin, lips or tongue look blue or grey: call 999 now. Colour changes are harder to see on brown and black skin, so check the palms, soles, lips and tongue. If you are worried but it is not an emergency, call NHS 111. In Northern Ireland use your GP out-of-hours service.

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Cerebral palsy

Pain, positioning, seizures and the causes to treat before anything else.

The short version

  • Treat the causes first. Optimise sleep hygiene, manage treatable causes, and only consider medication if no treatable cause is found. Medication is not step one.
  • You have a key role in recognising pain. Professionals are expected to ask about pain, distress and sleep at every contact.
  • Ask about breathing in sleep, seizures, pain, needing repositioning, night feeds or orthoses, the bedtime routine, and side effects of medicines.
  • If your child cannot tell you they hurt, the free Paediatric Pain Profile builds a picture of them comfortable so you can score against it.
  • If your child has significant sight loss and sleep keeps sliding later, raise it yourself. The guidance will not prompt anyone to ask.

The rest of this page explains where this comes from. You do not have to read it tonight.

About 3 minutes to read

Cerebral palsy

NICE guideline NG62 says sleep disturbances here are common (it publishes no percentage) and may be caused by things like environment, hunger and thirst. Its list of the commonest condition-specific causes gives you what to ask about:

The order of the recommendations is the practical message

NICE says: optimise sleep hygiene, then manage treatable causes, and only then, "if no treatable cause is found, consider a trial of melatonin... particularly for problems with falling asleep". It also says not to offer regular sedative medication without specialist advice, and to refer to a specialist sleep service if disturbance continues. Treat the causes first. Medication is not step one.

Pain, when your child cannot tell you

NICE says "parents and familiar carers have a key role in recognising and assessing pain", that professionals should ask about pain, distress and sleep at every contact, and that pain-related behaviour "can present differently". It names the Paediatric Pain Profile, free and photocopiable, which works by building a picture of your child when they are comfortable so you can score against it. Cerebra publishes a free Pain: A Guide for Parents. The causes NICE names are worth listing at an appointment: scoliosis, hip subluxation or dislocation, increased muscle tone, muscle fatigue and immobility, constipation, vomiting and reflux. Night-time muscle spasms are a recognised reason for oral diazepam or baclofen at bedtime, which is a conversation for the prescriber. NICE also states that "epilepsy occurs in around 1 in 3 children with cerebral palsy" and "around 1 in 2 children with dyskinetic cerebral palsy".

Sight loss, and why your care team may not raise it

NICE says around 1 in 2 children with cerebral palsy have some form of visual impairment, and cerebral visual impairment around 1 in 5. Yet visual impairment appears nowhere in NICE's list of causes of sleep disturbance, while Newman's study found it carried a strongly raised risk of difficulty getting to sleep and staying asleep. Without light reaching the brain the body clock cannot be set by the light and dark cycle. If your child has significant sight loss and their sleep keeps sliding later, raise it, because the guideline will not prompt anyone to ask.

If your child needs turning in the night, that will disturb their sleep, and it is a reason to ask an occupational therapist about the bed and mattress. If your child is tube fed overnight, general advice that night feeds are not needed after 9 to 12 months does not apply: there is usually a medical reason for the feed.

Sleep positioning systems: what NICE actually says

NICE guidance on spasticity says to consider 24-hour postural management, including at night, for postural reasons: body shape, hips, comfort, preventing contractures. NICE guidance on cerebral palsy separately says do not offer sleep positioning systems solely to manage a sleep problem. The word doing the work is "solely": if your child has night positioning equipment for postural reasons, that recommendation stands, and what is ruled out is introducing it as a treatment for insomnia on its own. A 2015 Cochrane review of two small trials involving 21 children found no significant difference in sleep or pain.

NICE requires clinicians to check any overnight orthosis "does not cause injury" and "does not disturb sleep", and to review it at every contact, so a splint that wakes your child is worth reporting. If you are waiting for equipment, services must "ensure that children and young people have timely access to equipment necessary for their management programme (for example, postural management equipment such as sleeping, sitting or standing systems)", and must "offer training to parents and carers". Night-time postural care under age 2 needs careful consideration with your therapist.

Where this comes from

Last checked 1 August 2026. This page is general information, not medical advice. If you are worried about your child, speak to your health visitor or GP.