Your child cannot tell you it hurts. They cannot point to the spot. They cannot rate it on a scale of one to ten. But they are telling you something: with their eyes, their body, their behavior, their refusal to eat, their 3 a.m. screaming that no one can explain. The question every parent of a non-verbal child with CP carries is devastating in its simplicity: Is my child in pain right now, and am I missing it?
How Common Is Pain in Children with CP?
Research shows that up to 75% of children with cerebral palsy experience chronic pain (Penner et al., DMCN, 2013). Pain prevalence increases with motor severity, meaning the children least able to communicate are the most likely to be suffering. Despite this, pain in CP is systematically underrecognized and undertreated because clinicians and families often attribute pain behaviors to “just being part of CP” or to behavioral causes.
Pain is never “just part of CP.” It always has a cause, and that cause is almost always treatable once identified.
Behavioral Signals of Pain
Non-verbal children express pain through a constellation of behavioral changes that parents can learn to read:
| Signal | What It May Look Like | Common Pain Source |
|---|---|---|
| Facial grimacing | Furrowed brow, clenched jaw, squinting | Any pain source |
| Increased crying/irritability | Inconsolable crying, especially during specific activities | Hip displacement, dental, constipation |
| Guarding/stiffening | Pulling away, stiffening when a body part is moved | Musculoskeletal, fracture, equipment pressure |
| Sleep disruption | Waking frequently, difficulty settling | Hip pain, reflux, spasms, positioning |
| Feeding refusal | Turning away, clamping mouth, decreased intake | Dental pain, GERD, constipation |
| Increased tone/spasms | Worsening spasticity, more frequent spasms | Pain from any source increases tone |
| Withdrawal | Decreased engagement, loss of interest in toys/people | Chronic pain, depression |
If your child’s CP resulted from a birth injury, compensation can fund the care they need.
The Most Common Pain Sources in CP
Musculoskeletal pain
Hip displacement, muscle contractures, scoliosis, and osteoporosis-related fractures are the leading causes of pain in children with CP. Hip displacement alone accounts for a disproportionate share of pain in non-ambulatory children, often manifesting as increased irritability during diaper changes, dressing, or transfers.
Gastrointestinal pain
Constipation (affecting up to 74% of children with CP) and gastroesophageal reflux (GERD) are extremely common and frequently cause significant abdominal discomfort. A child who arches their back, refuses to eat, or wakes crying may be experiencing GI pain.
Dental pain
Children with CP are at higher risk for dental problems due to enamel defects, GERD-related erosion, medication side effects (gingival hyperplasia from phenytoin), and difficulty with oral hygiene. Dental pain is one of the most commonly missed sources in non-verbal children.
Spasticity-related pain
Muscle spasms themselves are painful. Children with poorly managed spasticity experience daily discomfort that worsens with activity, positioning changes, cold temperatures, and emotional distress.
Equipment and positioning pain
Ill-fitting AFOs, wheelchair pressure points, and prolonged positioning in one posture cause localized pain that the child cannot report. Regular equipment checks and skin inspection are essential.
Using Validated Pain Assessment Tools
The revised FLACC scale (Face, Legs, Activity, Cry, Consolability) is specifically adapted for non-verbal children with disabilities. It scores five behavioral categories from 0 to 2, producing a total score of 0 to 10. A score of 4 or above suggests moderate pain requiring intervention.
Use the FLACC at consistent times (during care activities, after position changes, during suspected pain episodes) and share the scores with your child’s medical team. Numerical tracking over time helps clinicians assess whether treatments are working.
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What to Do When You Suspect Pain
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