Pain in cerebral palsy is often overlooked and sometimes goes untreated. It is important that pediatricians be aware that chronic pain in cerebral palsy often begins in childhood. Pain may have multiple causes and locating the sources of pain can be difficult.

Doctors and caregivers may think pain is due to the underlying spasticity and contractures, but it may be due to an unknown, but treatable, problem (i.e urinary tract infection). Parents are encouraged to ask their child’s pediatrician and other professionals about addressing any discomfort.

When communication with the child is not possible a parent acts as a critical liaison between the clinician and patient. Partner with your child’s doctors to try to locate where your child may be experiencing pain so that the doctor may work on treating its underlying causes.

Less Recognized Causes of Pain

Research

In 2013 Dr. Darcy Fehlings of the University of Toronto led researchers at Holland Bloorview Kids Rehabilitation Hospital in a study about pain in children with cerebral palsy.

They discovered that more than 25 percent of children with cerebral palsy, seen by physicians, have moderate to severe chronic pain limiting their activity. More than half of the participants were in some kind of pain that was not being treated. This study demonstrated that hip pain and increased muscle tone are common causes of pain for children.

It is particularly important for clinicians to look for discomfort in people who have dyskinetic forms of cerebral palsy, that include dystonia. Pain due to dystonia is often overlooked, yet it is the second most common cause of pain for people who have cerebral palsy. Hip dislocation is number one.

Developing a strategy to prevent, assess, and manage chronic pain is key to improving their health and quality of life.

The information from this page appears in our free and downloadable cerebral palsy tool kit.