Information for the public

Pain, discomfort, distress and disturbed sleep

Pain, discomfort and distress

It is common for children and young people with cerebral palsy to have pain or discomfort, or to be distressed, especially if they have severe disability. They might have a painful spine or hips, muscle stiffness and spasms, or other problems like constipation or reflux. Sometimes it can be hard for them to let people know they are in pain – especially if they have communication problems, learning disabilities or sensory problems – so they may show their pain or discomfort in other ways. They might cry often or find it difficult to sleep. Your care team should always ask you about these possible signs of pain or discomfort. Speak to them if you think your child is in pain.

You and the care team should make a note of when your child seems to be in pain and how long it lasts, to help find the cause and make sure that they are offered treatments that can help. It is also important to rule out other causes of pain and distress not directly related to cerebral palsy (like headaches, back pain, period pain, emotional problems, hunger or thirst).

To treat your child's pain your care team may suggest trying a short course of painkillers such as paracetamol or ibuprofen. If you need more help, your child should be referred to a specialist pain service – they may have a combined assessment of their pain, discomfort, distress and sleep problems.

Pain during treatments

Treatments to help conditions caused by cerebral palsy can cause pain – for example surgery, physical therapies or injections to reduce muscle spasms or drooling. Your care team should manage your child's pain during the treatment, and make sure that any necessary equipment and rehabilitation is available.

Disturbed sleep

Children and young people with cerebral palsy may struggle to fall asleep and stay asleep, or be sleepy during the day. Disturbed sleep is a possible sign of pain, but there are many other things that can cause, or add to, sleep problems. Your child's care team should look at these with you. Problems can include:

  • needing help to turn over

  • seizures (fits)

  • breathing problems when they are asleep

  • effects of medicines

  • hunger or thirst

  • needing to use splints (orthoses) or feeding tubes at night.

Keeping a sleep diary may help you work out what is causing the problem. Your care team should then work with you to help your child sleep better. This might include changes to their bedtime routine or where they sleep.

Over time, the effects of disturbed sleep can be distressing for families, but you should not be given sedatives for your child without specialist advice. If a cause for the sleep problems is not found after you have had support from your care team, they might offer a medicine called melatonin to help your child fall asleep. They should refer your child to a sleep specialist if things don't get better.

Using melatonin 'off-label'

At the time of publication, melatonin is recommended for 'off‑label' use if it is used for anyone under the age of 18. Your doctor should tell you this and explain what it means for you. There is more information about when medicines are used off‑label on NHS Choices.

Questions you or your child may want to ask

  • How will my child be assessed if they are not able to tell us about their pain?

  • What happens if the cause of my child's pain is not clear?

  • What treatments are there for pain?

  • What support can we get for my child's sleep problems?

  • How might melatonin help with sleep problems? Are there any side effects?

  • Information Standard