What is Cerebral Palsy (CP)?
"Cerebral" means "brain"
"Palsy" means lack of muscle control
What the experts say...
The definition of cerebral palsy has gone through a lot of changes over the years. The most current definition, developed by a team of international experts, defined cerebral palsy as a group of permanent, but not unchanging, disorders of movement and/or posture and of motor function, which are due to a non-progressive interference, lesion, or abnormality of the developing/immature brain. The motor disturbances of cerebral palsy are often accompanied by disturbances of sensation, perception, cognition, communication, and behaviour, by epilepsy and by secondary musculoskeletal problems.
In simple terms...
In essence, cerebral palsy is a term used to describe a condition where a person has challlenges with making and/or controlling their body movements. This difficulty is the result of damage to the areas of the brain that control movements. This damage occurs early in life, before, during or soon after birth.
This can sometimes go hand in hand with the person having difficulty feeling sensations, difficulty feeling where their body is in space, learning challenges, communication challenges, epilepsy and joint/muscle problems.
Does my child have cerebral palsy?
The first sign of cerebral palsy in your infant or child may be a difference or delay in the expected development of movement skills. This is often noticed as a difference in movement between the right and left sides of the body, or slower to reach the milestones of sitting up, standing and walking independently.
In some cases, the movement problems are found because the child is being monitored by health professionals due to being in a risk group for CP (such as children born prematurely).
If you think this could be your child, please see your GP for a referral to a pediatrician.
Okay, my child has a cerebral palsy diagnosis. I need more information...
Most importantly the term "cerebral palsy" only describe how your child moves. It does not describe or define their personality, likes, dislikes or how much they love you.
Cerebral palsy is a big umbrella term; covering a wide range of different movement difficulties and other associated difficulties. Under this big umbrella, every child with cerebral palsy have their own unique needs.
We are going to now explain a few things that come under this big umbrella. You may have heard this explained or talked about by your doctor, pediatrician or other families. There is a lot of information below, so please take the time you need to understand. If this is overwhelming or you have more questions, please reach out to your GP, maternal and child health nurse, pediatrician or therapist and they can also help you.
The 3 main topics to cover are types of cerebral palsy, the severity and how much the body is affected.
Types of Cerebral Palsy
Hypotonic CP describes the muscles of the body where low tone is present throughout the body. The child may present with weak muscles and poor balance.
Spastic cerebral palsy is the most common type. It comes from the term “spasticity” which means stiffness or tightness of muscle due to increased tone. There is increased tone because the messages to the muscles are being sent incorrectly due to damaged parts of the brain.
Example: When we move a body part, one muscle group is activated or contracted, whilst another muscle group relaxes. In a child living with spastic CP, both groups of muscles will contract together, making it difficult to move.
Dyskinetic cerebral palsy is a type of CP where the child has involuntary, uncontrollable, irregular movements when they are trying to move.
Dyskinetic movements can be:
Twisting and repetitive movements - known as dystonia
Slow, 'stormy' movements - known as athetosis
Dance-like irregular, unpredictable movements - known as chorea.
Dystonia describes constant muscle activation that frequently causes twisting or repetitive movements.
A child living with dystonia might be trying to reach for their bottle with their arm. As their dystonia kicks in, the child might start twisting at their neck, open their mouth or their legs start to tense and kick out. These are involuntary movements during an attempt for controlled movement of reaching out the arm.
Athetosis describes slow, continuous, involuntary circling movements that occur particularly in the child’s arms and hands, legs and feet. These movements can also be observed in the face and mouth. These can happen at rest but increases when trying to move. A child with athetosis also has fluctuating tone and can go from being very floppy (hypotonia) to very tight.
An infant with athetosis might try to roll over to their stomach from lying. As the infant tries, their finger and hands might start twisting or get stuck in difficult positions, and they might start kicking and wiggling their toes.
Chorea is characterized by involuntary movement that are fast, out of nowhere and unpredictable. People with choreoathetosis will experience both uncontrolled extra movements in arms, hands and feet plus sudden movements in other parts of their body.
A child with mild chorea who is reaching for a tissue may appear clumsy and fidgety. They appear to try to reach but constantly miss the target.
Ataxic cerebral palsy is the least common.
Ataxic or “Ataxia” is a term used to describe unsteady shaky movements or tremor. A child living with ataxic CP also has problems with balance.
Some children can have a combination of different types of cerebral palsy. When there is injury to different parts of the brain, a child may exhibit movement challenges that don't fit in one box. For example, some children have tight muscles and twisting movements (this is a combination of spastic and dyskinetic cerebral palsy).
It is important that you don't get caught up in the type of cerebral palsy your child has and don't box your child into one category.
It's important to focus on what your child can do, your child's goals and what your child needs.
What about mixed cerebral palsy?
Severity refers to how much movement your child has. Your paediatrician or physiotherapist will grade the severity of your child according to the Gross Motor Function Classification Scale (GMFCS).
The GMFCS describes 5 “levels” of motor function, with stronger emphasis on sitting, standing and walking. Take walking for example:
Level I and II, describes children who are walking independently
Level III, describes children who use sticks or crutches to help them walk
Level IV and V, describe children who use mobility devices, like a wheelchair, to get around
Below is an example of the GMFCS.
Gross Motor Classification Scale (GMFCS)
GMFCS Level I
Children walk at home, school, outdoors and in the community. They can climb stairs without the use of a railing. Children perform gross motor skills such as running and jumping, but speed, balance and coordination are limited.
GMFCS Level II
Children walk in most settings and climb stairs holding onto a railing. They may experience difficulty walking long distances and balancing on uneven terrain, inclines, in crowded areas or confined spaces.
Children may walk with physical assistance, a handheld mobility device or used wheeled mobility over long distances. Children have only minimal ability to perform gross motor skills such as running and jumping.
GMFCS Level III
Children walk using a hand-held mobility device in most indoor settings. They may climb stairs holding onto a railing with supervision or assistance. Children use wheeled mobility when traveling long distances and may self-propel for shorter distances.
GMFCS Level IV
Children use methods of mobility that require physical assistance or powered mobility in most settings. They may walk for short distances at home with physical assistance or use powered mobility or a body support walker when positioned. At school, outdoors and in the community children are transported in a manual wheelchair or use powered mobility.
GMFCS Level V
Children are transported in a manual wheelchair in all settings. Children are limited in their ability to maintain antigravity head and trunk postures and control leg and arm movements.
GMFCS descriptors copyright © Palisano et al. (1997) Dev Med Child Neurol 39:214-23 CanChild
Illustrations copyright Version 2 © Bill Reid, Kate Willoughby, Adrienne Harvey and Kerr Graham, The Royal Children’s Hospital Melbourne.
It is important to note here that this scale is used to help your doctors and health professionals get a basic understanding of the level of your child’s movement challenges which influences the range of supports that your child will need. It does not mean that your child is limited in his or her abilities. Your child is still able to learn and have the potential to gain new skills to lead a good quality life.
What parts of the body are affected?
Different children will also be affected in different parts of their body. These are the terms you would hear being used to describe the parts affected:
One side of the body is affected - in particular, the leg and arm. Can also sometimes be known as “hemiparesis”
Both legs are mainly affected. Some children may have mild difficulties with their arms or hands.
Both arms and both legs are affected. The muscles of the trunk, face and neck can also be affected.
For some children, they will only experience movement challenges. Other children may also experience additional challenges due to injuries to other parts of the brain.
This means some children with CP will experience additional challenges, such as:
Disturbed or altered sensory system
Problems with hearing and/or vision
Motor planning challenges
Feeding, swallowing and saliva control issues
Respiratory and gastro-intestinal health issues
What does CP really mean for me and my child's life?
Raising a child with a disability is not easy. Life will present some challenges, but there will be many times shared with your child of hope, achieving goals, success and fun. Find out more on what cerebral palsy means for you, your child and who may be helping you in your journey.