What is cerebral palsy?
Cerebral palsy refers to a group of conditions affecting movement and posture that are attributable to changes within the developing foetal or infant brain.
For every one thousand people born in Australia, one to two have cerebral palsy.
The causes of cerebral palsy are complex and not fully understood. Risk factors for cerebral palsy are numerous, and include genetics, preterm delivery and low birthweight, and pregnancy infection. There is no cure for cerebral palsy, but efforts to prevent the condition are generating promising results.
How does cerebral palsy affect what people can do?
Cerebral palsy affects people differently, with one in three unable to walk, one in three unable to manipulate objects with their hands, and one in four unable to talk.
Aside from changes to motor control, three in four experience pain, one in two have intellectual impairment, one in four have epilepsy, and one in four have impaired vision. More severe limitations to physical functioning are associated with greater likelihood of associated conditions.
How does cerebral palsy affect people’s participation in society?
People with cerebral palsy often experience difficult environments (e.g., physical barriers, prejudice, and discrimination). When combined with the effects of cerebral palsy on their functioning, the challenges within their environments contribute to unfavourable social outcomes (e.g., low educational attainment and unemployment).
With opportunities and support, however, many people with cerebral palsy find ways of participating in society as others do.
Types of cerebral palsy
A child with spasticity will have excessively tight muscles, resulting in difficultly with control, coordination, and strength. Their movements can be slow and they can fatigue easily. They need to practise movements to build stamina and response speeds.
A child with dyskinetic cerebral palsy will have involuntary movements when they try to move.
Emotional changes increase involuntary movements. When they are relaxed, the child may move and respond slowly. When they are excited, they may have increased involuntary movements. It can be very difficult to interpret responses or understand communication for this reason. It is important for children to learn strategies to regulate their emotions, stabilise their body and move just the parts they intended.
A child with hypotonia has loose, floppy limbs and can have trouble finding strength to support their body and its movements. They are often first seen to struggle with head control, especially when being pulled by the arms into a sitting position.
These children need to learn strategies that build stamina and strength to support their body and movements.
A child with ataxia will have difficulty with balance and maintaining posture, and have lower than normal muscle tone throughout their body.
They can have difficulty guiding and timing movements, and they can be slow to respond. Their speech will have poor pronunciation, volume and little tonal variation.
Children with ataxia need to learn how to strengthen their trunk and stabilize their bodies.
A combination of spacticity, dyskinetic cerebral palsy, hypotonia and ataxia
How cerebral palsy affects individuals
Cerebral palsy affects each person differently. The way each person moves, communicates and lives their life will be completely different.
People without CP are able to move and control their bodies freely due to muscle tension, or tone, which is controlled by messages from the brain. In a person with cerebral palsy, these messages from the brain don’t travel the way they’re supposed to. They can be distorted, completely out of time or not occur at all.
The result is either increased muscle tension (hyertonus) or reduced muscle tension (hypotonus).
The parts of the body affected by cerebral palsy will differ from one person to another, along with the various body parts and areas.
Depending on which parts are affected, different terms are used to describe the effects.
- Hemiplegia – the leg and arm on one side of the body are affected.
- Diplegia – both legs are affected significantly more than the arms. People with diplegia may have some clumsiness with their hand movements.
- Quadriplegia – both arms and legs are affected. The muscles of the trunk, face and mouth can also be affected.
How cerebral palsy is measured
The EDACS system is used to measure a child’s eating and drinking ability. This includes safety (aspiration and choking) when eating and drinking, efficiency (food loss and speed of finishing meal) and the amount of assistance a person needs.
Can independently eat and drink safely and efficiently.
Eats and drinks safely but with some limitations to efficiency.
Eats and drinks with some limitations to safety and there may also be limitations to efficiency. Solids may be difficult to swallow and choking may be a risk.
Eats and drinks with significant limitations to safety and cannot swallow food and drink without risk of aspiration. Smooth purees and mashed foods can be given through oral feeding.
Unable to eat or drink safely, relies on tube feeding and is at high risk for aspiration. Levels of assistance Independent – can bring food and drink to mouth without assistance. Requiring assistance – can bring food and drink to mouth using adaptive equipment or requires another individual to assist them using adaptive equipment. Totally dependent - another individual brings food and drink to mouth.
GMFCS is used to categorise the severity of CP on a person. This type of assessment looks at a number of different ways of moving including the way the person sits and walks.
The Gross Motor Function Classification System categorises this ability according to 5 different levels, starting from 1 (least severe) through to 5 (most severe).
Walks without crutches or limitations but has decreased speed, balance and coordination.
Walks independently, can climb stairs with a railing, may struggle on uneven surfaces or in crowds, cannot run or jump very well.
Walks using a hand-held mobility device, may be able to climb stairs using a railing.
Severely limited, may use powered mobility.
No self-mobility, must be transported in a manual wheelchair, cannot sit or stand independently even with equipment. Once a child turns 5, it is highly unlikely that they will move between GMFCS level. For example, a 7-year-old that requires a wheelchair will most likely need one for life.
MACS is used to measure a child’s ability to handle objects in everyday life.
The MAC system examines a child’s ability to handle objects in everyday activities. Similarly to the GMFCS, the MACS also looks at 5 separate categories. Knowing a child’s MACS level can help parents, teachers and others to understand in which situations a child is independent and the extent to which
they need support or adaptations.
Handles objects easily, some limitations in speed and accuracy when doing manual tasks.
Some reduced speed and accuracy in object handling, may avoid certain tasks or look for alternatives.
Experiences difficulty, needs assistance for activities.
Needs continuous support, handles only a limited selection of easily managed objects.
Does not handle objects, needs total assistance.
This system assesses everyday communication, focusing on how information is expressed and how it is received. All methods of communication can be examined using this measurement, including speech, sign language, eye gaze, images, communication books or boards, and speech generating devices. Familiar and unfamiliar communication partners are also considered with the CFCS.
Effective sender and receiver with unfamiliar and familiar partners.
Effective but slower paced sender and/or receiver with unfamiliar and/or familiar partner.
Effective sender and receiver with familiar partners.
Inconsistent sender and/or receiver with familiar partners.
Seldom effective sender or receiver even with familiar partners.
Diagnosis of cerebral palsy can often be a lengthy and complex process. It is usually when a baby or child does not meet their developmental milestones that a disability is even considered.
A parent or doctor may be alerted to the possibility of cerebral palsy if the baby shows unusual postures or has delayed motor development. Consequently, this can take some time to become evident. Additionally, a routine brain scan may show up abnormalities in the brain. If this occurs, then developmental milestones tend to be more closely monitored.
An unusual brain scan does not necessarily mean a cerebral palsy diagnosis, but instead just indicates that it could be a possibility. If a baby was very premature, or there were complications during birth, it is likely that the baby’s health will be monitored quite closely and may be on a watch list for cerebral palsy. In these instances, a diagnosis may be reached much faster.
Please know that prematurity or delivery complications do not guarantee that a child will have cerebral palsy.
As a parent or carer, receiving any diagnosis for your child can be a scary and confusing time. The important thing to know is that you are not alone.
If you have just received a diagnosis of cerebral palsy and are unsure of what to do next, or just want someone to chat to who understands, please contact us.
Treatments for CP
While there is no cure for cerebral palsy, the associated disabilities can often be managed with appropriate treatment and therapies. The treatment plan will vary from person to person according to the type of CP they have and the severity of the symptoms.
A particular treatment may work for one person, but not another. It is imperative that each person is assessed individually by a medical specialist or allied health professional so that their specific needs can be identified and addressed over time.
It is important to also note that the original brain injury that caused the person’s CP cannot be cured. The resulting impairments however, can be managed with various treatments.
The main way to do this is by therapy and using adaptive equipment such as wheelchairs. Again, depending on the nature of the CP, drug therapy and even surgery may help.
The objective of any treatment for people with cerebral palsy is always to maximise independence, control pain, foster self-care and optimise mobility and communication.
Research into cerebral palsy is critical in helping us to discover and understand its causes, leading into better options for treatment and to potentially develop preventative measures.
Cerebral palsy research is sponsored and conducted by a variety of organisations including government, non-government organisations, community and industry-based groups.
One such organisation is the Royal Children’s Hospital Murdoch Children’s Research Institute, which has a substantial cerebral palsy research program. The Institute conducts vital research into conditions affecting babies, children and adolescents, and is currently working on a program called the Centre of Excellence in Cerebral Palsy. The aim of this project is to bring researchers in cerebral palsy together, making generation of a list of CP research projects easier to identify.
Research is also being conducted at Monash Medical Centre, Victoria University as well as other institutions.
There are many studies being conducted nationally and internationally into the causes of cerebral palsy.
These include studying the way the brain develops in premature babies, assessing MRI patterns in order to determine risk factors for cerebral palsy, genetic factors and infections as well as many other areas.
Recent exciting advances in research have demonstrated that the brain changes with every different activity that it performs. This is also referred to as the brain being ‘plastic’. When certain parts of the brain are damaged, sometimes other areas of the brain may take over to make up for the sustained injury.
It is discoveries such as these that offer hope that gene and stem cell therapies may one day be used to repair some or all of the damage to the developing brain that leads to cerebral palsy.