What are the most common causes of pain in children with cerebral palsy?

Musculoskeletal causes are common and include spasticity itself, joint contractures, hip subluxation or dislocation, and scoliosis, all of which can cause chronic pain that worsens with movement or positioning. Gastrointestinal causes include reflux and constipation, both frequent in CP. Dental problems are a commonly overlooked source of pain, particularly in children who cannot describe mouth discomfort. Fractures are also a real risk, sometimes occurring with relatively minor trauma due to reduced bone density from limited weight-bearing, and can be missed if a child cannot localise or describe the pain clearly.

Why is a parent's observation so important in assessing pain?

Because parents and familiar caregivers typically know a child's individual baseline behaviour better than any clinician meeting them for the first time, which makes them uniquely positioned to notice meaningful changes: a new pattern of irritability, altered sleep, a specific vocalisation, or a change in how the child holds their body. Clinical guidance explicitly recognises parents and familiar carers as having a key role in identifying pain, discomfort, and distress in children with cerebral palsy, not as secondary reporters but as central to accurate assessment.

When does a change in behaviour need urgent medical attention rather than routine monitoring?

Seek prompt medical evaluation for a sudden, significant change in behaviour without an obvious explanation, especially if accompanied by fever, reduced movement of a limb, visible swelling, a new reluctance to be touched or moved in a specific way, or a marked change in feeding or sleep that persists over more than a day or two. These patterns can indicate a fracture, infection, or another acute problem that needs prompt assessment rather than continued observation at home.

Pain in Cerebral Palsy: How to Assess It When Your Child Cannot Tell You

Comorbidities 15 min read

Pain in Cerebral Palsy: How to Assess It When Your Child Cannot Tell You

Q: Why does pain go unrecognised so often in children with cerebral palsy?

Because the usual way pain gets noticed, a child saying it hurts and pointing to where, isn't available for many children with CP who have limited or no verbal communication. Pain in this population is also frequently expressed atypically: through changes in muscle tone, altered sleep, irritability, or behaviours that get attributed to the child's baseline condition rather than recognised as a new or worsening signal. Research describes this directly: pain in children with CP is difficult to assess and is therefore not sufficiently recognised and treated, putting these children at real risk of ongoing, unaddressed pain.

Q: What is the r-FLACC scale and why is it specifically relevant to CP?

The r-FLACC, or revised Face, Legs, Activity, Cry, Consolability scale, is a behavioural pain assessment tool scored across five categories, each rated 0 to 2, for a total score from 0 to 10. It was specifically validated in a study population of children with cerebral palsy and is considered internationally reliable for this group. What makes it particularly useful is an open-ended descriptor section, allowing a parent or clinician to note a child's individual, specific pain behaviours that might not appear on a generic checklist, since pain expression genuinely varies from child to child.

Q: What other tools exist besides the r-FLACC?

The Non-Communicating Children's Pain Checklist (NCCPC) is a 27-item observational tool organising behaviours into categories including vocal expressions, facial expressions, body and limb movements, and social responses like withdrawal or seeking comfort. A postoperative version (NCCPC-PV) removes eating and sleeping items to reduce false positives after surgery specifically. The Paediatric Pain Profile is the tool most specifically validated for postoperative settings. The Individualized Numeric Rating Scale (INRS) is built around pain indicators unique to one specific child, identified in advance by someone who knows them well.

Q: Can surgery for spasticity actually reduce a child's pain?

For pain specifically caused by chronic spasticity, such as pain linked to tight, overworked muscles, contractures, or hip strain from ongoing muscle imbalance, addressing the spasticity directly can meaningfully reduce that category of pain, since it targets the underlying mechanical cause rather than only masking the symptom. Minimally invasive procedures such as SFDM (Selective Fibrotomy of Damaged Muscles), offered at CP Clinic, are designed specifically to reduce this kind of chronic spasticity from age 2 onward. This applies specifically to spasticity related musculoskeletal pain; pain from other causes, such as reflux, dental issues, or fractures, needs its own separate evaluation and treatment.

A child who can say “it hurts here” gets help quickly. A child who can’t is at real risk of pain going unnoticed for weeks, misread as irritability, or simply absorbed as part of how they are. This isn’t a small gap. It’s one of the more serious, correctable safety issues in caring for a nonverbal child with CP, and there are validated tools built specifically to close it.

Written by CP Clinic Medical Team Tovmed Medical Center, Vinnytsia, Ukraine

Medically reviewed by Prof. Vigein Tovmasian PhD · Orthopedic Surgeon · Honorary Doctor of Ukraine

Why pain goes unrecognised

The core problem, stated plainly

Pain in children with CP is genuinely difficult to assess, and as a direct result, it’s not sufficiently recognised or treated. Children with more significant cognitive or communication impairment face a real, documented risk of pain, whether from surgery, medical procedures, or ongoing chronic conditions, being missed entirely, with a real cost to their quality of life.

This happens for understandable reasons. The usual route to recognising pain, a child telling someone and pointing to where, simply isn’t available. Pain in this population is also frequently expressed atypically: through changed muscle tone, disrupted sleep, increased irritability, or shifts in behaviour that get quietly absorbed into “that’s just how they’ve been lately” rather than flagged as a new signal worth investigating.

The r-FLACC scale: built specifically for CP

The revised FLACC scale (Face, Legs, Activity, Cry, Consolability) is a behavioural pain assessment tool that was specifically validated in a study population of children with cerebral palsy, and is considered internationally reliable for this group.

FFace

LLegs

AActivity

CCry

CConsolability

Each of the five categories is scored from 0 to 2, giving a total possible score from 0 to 10. What makes the r-FLACC particularly useful for CP specifically is an open-ended descriptor section, which lets a parent or clinician record a child’s own individual pain behaviours, the specific sound, expression, or posture that particular child shows, rather than relying only on generic descriptions that might not fit every child’s way of expressing discomfort.

Ask your child’s care team whether an r-FLACC assessment has been used, particularly around surgery, procedures, or any period of unexplained behaviour change. It’s a genuinely quick tool to learn and apply, and having a shared, structured way to describe what you’re observing makes it far easier for a clinician to act on your concern quickly.

Other validated tools worth knowing

NCCPC (Non-Communicating Children’s Pain Checklist)

A 27-item observational tool organising behaviours into categories including vocal expressions, facial expressions, body and limb movements, and social responses like withdrawal or seeking comfort. A postoperative version removes eating and sleeping items specifically to reduce false positives after surgery.

Paediatric Pain Profile (PPP)

The tool most specifically validated for postoperative pain assessment in this population, useful to know about if your child is facing surgery.

Individualized Numeric Rating Scale (INRS)

Built around pain indicators unique to one specific child, identified in advance by someone who knows them well, rather than a generic list applied to every child equally.

None of these tools require special equipment, and all are designed to be used by parents and clinicians together, not by specialists alone. If the cause of pain, discomfort, or distress isn’t clear after a routine assessment, current clinical guidance recommends referral for a specialist multidisciplinary assessment rather than continued uncertainty.

Common causes of pain, by category

Musculoskeletal

Spasticity itself, joint contractures, hip subluxation or dislocation, and scoliosis are all frequent sources of chronic pain, typically worse with movement, positioning, or during stretching and physiotherapy.

Gastrointestinal

Reflux and constipation are both common in CP and can cause significant discomfort that’s easy to misattribute to general fussiness rather than a specific, treatable cause.

Dental

A frequently overlooked source of pain, particularly in children who cannot describe mouth or tooth discomfort directly, making regular dental review important even without an obvious complaint.

Fractures

Reduced bone density from limited weight-bearing raises fracture risk, sometimes from relatively minor trauma, and can be missed if a child cannot clearly localise or describe the pain.

When the cause is spasticity related

For pain that traces back specifically to chronic spasticity, tight, overworked muscles, developing contractures, or hip strain from ongoing muscle imbalance, addressing the spasticity directly targets the mechanical cause rather than only managing the symptom.

Minimally invasive procedures such as SFDM (Selective Fibrotomy of Damaged Muscles), offered at CP Clinic from age 2 onward, are designed specifically to reduce this category of chronic spasticity. This applies to spasticity related musculoskeletal pain specifically; pain from reflux, dental issues, or fractures needs its own separate evaluation and treatment.

Everyday behavioural signs worth learning

😣
Facial changes Grimacing, furrowed brow, or a tightened expression that differs from your child’s usual resting face.
🗣️
New or different vocalisations Moaning, a specific cry pattern, or increased vocal distress that doesn’t match the usual range you recognise.
🦵
Body and limb changes Guarding a particular area, increased stiffness, an unusual resting position, or reluctance to be moved or positioned in a way that was previously fine.
🌙
Sleep and appetite disruption A meaningful change from your child’s usual pattern, particularly if it persists over more than a day or two without an obvious cause.
🤝
Social withdrawal or seeking unusual comfort Pulling away from interaction that’s usually welcomed, or the opposite, seeking more physical comfort or reassurance than typical.

Why your observation matters most

You know your child’s baseline better than anyone examining them for the first time. Clinical guidance explicitly recognises parents and familiar carers as having a key role in identifying pain, discomfort, and distress in children with CP, not as a secondary source of information but as central to getting this right. A specific change you notice, however hard to put into words, is worth reporting directly and specifically rather than downplaying because you’re “not sure” or it “might be nothing.”

Keeping a brief, dated note of what you observed, when, and what seemed to help or worsen it gives your child’s care team something concrete to act on, and it’s exactly the kind of information tools like the r-FLACC are built to capture systematically.

When to seek help urgently

Don’t wait for the next scheduled appointment if you see

A sudden, significant behaviour change with no obvious explanation
Fever alongside new distress or reduced movement
Visible swelling, or reduced movement of a specific limb
New reluctance to be touched or moved in a particular way
A marked change in feeding or sleep persisting more than a day or two

These patterns can indicate a fracture, infection, or another acute problem that needs prompt assessment, not continued observation at home.

Concerned about pain, spasticity, or your child’s overall treatment plan?

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Frequently asked questions

Why does pain go unrecognised so often in children with cerebral palsy?

Because the usual way pain gets noticed, a child describing and pointing to it, isn’t available for many children with limited verbal communication. Pain is also frequently expressed atypically, through tone changes, altered sleep, or irritability attributed to baseline behaviour rather than recognised as a new signal. Research confirms pain in CP is difficult to assess and consequently under-recognised and under-treated.

What is the r-FLACC scale and why is it relevant to CP?

A behavioural pain tool scored across five categories (Face, Legs, Activity, Cry, Consolability), each rated 0 to 2, for a total of 0 to 10. It was specifically validated in children with CP and is internationally reliable for this group. An open-ended descriptor section lets caregivers note a specific child’s individual pain behaviours beyond the standard checklist.

What other tools exist besides the r-FLACC?

The NCCPC is a 27-item checklist covering vocal, facial, body, and social behaviours, with a postoperative version removing eating and sleeping items. The Paediatric Pain Profile is validated specifically for postoperative settings. The INRS is built around indicators unique to one specific child rather than a generic list.

What are the most common causes of pain in CP?

Musculoskeletal causes include spasticity, contractures, hip subluxation, and scoliosis. Gastrointestinal causes include reflux and constipation. Dental problems are commonly overlooked. Fractures carry real risk due to reduced bone density and can be missed if a child cannot localise the pain.

Why is a parent’s observation so important?

Parents typically know a child’s baseline behaviour better than any clinician meeting them for the first time, making them uniquely positioned to notice meaningful changes. Clinical guidance explicitly recognises parents as having a key role in identifying pain in children with CP, not as secondary reporters.

Can surgery for spasticity actually reduce pain?

For pain specifically caused by chronic spasticity, contractures, or hip strain from muscle imbalance, addressing the spasticity directly can meaningfully reduce that category of pain by targeting the mechanical cause. Procedures such as SFDM at CP Clinic are designed for this from age 2. Pain from other causes, like reflux or dental issues, needs its own separate treatment.

When does a behaviour change need urgent attention?

Seek prompt evaluation for a sudden significant behaviour change without explanation, especially with fever, reduced limb movement, visible swelling, new reluctance to be touched a certain way, or a marked feeding or sleep change persisting more than a day or two. These can indicate a fracture, infection, or acute problem needing prompt assessment.

References

Pedersen LK, Rahbek O, Nikolajsen L, Moller-Madsen B. (2015). “The revised FLACC score: Reliability and validation for pain assessment in children with cerebral palsy.” Scandinavian Journal of Pain. ScienceDirect ↗
“Pain assessment in non-verbal children with neurocognitive impairment: a review on current tools, challenges, and clinical perspectives.” Frontiers in Pain Research. PMC ↗
“Cerebral palsy in under 25s: assessment and management, Assessment of pain and/or distress.” NICE Guideline, NCBI Bookshelf. NCBI ↗
Solodiuk JC, Scott-Sutherland J, Meyers M, et al. (2010). “Validation of the Individualized Numeric Rating Scale (INRS): a pain assessment tool for nonverbal children with intellectual disability.” Pain.
“Pain Assessment in the Most Vulnerable Children.” International Association for the Study of Pain (IASP). IASP ↗

Medical disclaimer: This article is for informational purposes. Pain assessment and treatment should be carried out by qualified specialists who have evaluated your child directly.