C ere b ral Pal sy

an information guide for parents

Cerebral Palsy This book was written by members of the Department
An information guide for parents of Developmental Medicine, The Royal Children’s Hospital,
whose names are listed. Other departments of the
First edition 1989
hospital also provided help and advice. The editors
Second edition 2000
were Dinah Reddihough and Katherine Ong.
Third edition 2006
Fourth edition 2007 Enver Bajraszewski
Fifth edition 2008 Rod Carne*
Robyn Kennedy
All rights reserved
Anna Lanigan
No part of this publication may be reproduced, stored Katherine Ong
in a retrieval system, or transmitted, in any form or Melinda Randall
by any means, electronic, mechanical, photocopy Dinah Reddihough
or otherwise without the written permission of the Bev Touzel
publisher, The Royal Children’s Hospital, Melbourne.
* Currently working at the Monash Medical Centre.
ISBN 0958741654
We also thank Simon Harvey and Tony Catto-Smith who
provided advice about specific sections. The valuable
assistance provided by the Association for Children
with a Disability, particularly Anne Maree Newbold,
Jenny McAllister, Diane McCarthy and Fiona Gullifer,
and the Cerebral Palsy Support Network, particularly
Victoria Garner, is also acknowledged. Heather Liesis
and Anne Casey also provided advice. The booklet
was designed and illustrated by the Educational
Resource Centre. The Waverley Auxiliary provided
generous financial support for this publication.
 This book has been written primarily for parents
who have a child with cerebral palsy. If your child
has recently been diagnosed as having cerebral palsy,
you are probably feeling shocked by the news and
overwhelmed by the implications of the diagnosis. This
is a normal reaction and completely understandable.
We know that parents have many questions, concerns
and fears in relation to their child’s health and abilities.

We have written this book to answer some of your questions.

Every child with cerebral palsy is different. In some children
the problem may be so slight that he or she is only a little
clumsy with certain movements. In other children the problem
can be severe.
Because each child is different, the information is
presented in a general way. Please discuss your own
child’s issues with his or her therapists, social worker,
nurse, psychologist or doctor. They may not be able to
answer all your questions, but they will honestly try
to tell you what they do know. This book will discuss
the different types of cerebral palsy, the causes of
cerebral palsy, some associated problems and the range
of treatments available. We have provided information
about support services and where to turn to for help.
We hope to convey the message that no matter how
difficult things may seem at present, and despite the
many problems that you and your family will face over
the coming years, help is available.

1
 What is Cerebral palsy?
The brain controls all that we do. Different parts of Children with cerebral palsy can have problems such
the brain control the movement of every muscle of the as muscle weakness, stiffness, awkwardness, slowness,
body. In cerebral palsy, there is damage to, or lack of shakiness, and difficulty with balance. These problems
development in, one of these areas of the brain. can range from mild to severe. In mild cerebral palsy,
the child may be slightly clumsy in one arm or leg,
'Cerebral' – refers to the brain.
and the problem may be barely noticeable. In severe
'Palsy' – can mean weakness or paralysis or lack of cerebral palsy, the child may have a lot of difficulties in
muscle control. performing everyday tasks and movements.
Therefore cerebral palsy is a disorder of muscle control
which results from some damage to part of the brain.
The term cerebral palsy is used when the problem has
occurred early in life, to the developing brain.

movement

sight

speech
balance

2
What are the Various types of Cerebral palsy?
There are several different types of cerebral palsy: Ataxic cerebral palsy
This is the least common type of cerebral palsy.
Spastic cerebral palsy
Ataxic (or ataxia) is the word used for unsteady shaky
This is the most common type of cerebral palsy.
movements or tremor. Children with ataxia also have
Spasticity means stiffness or tightness of muscles.
problems with balance.
The muscles are stiff because the messages to the
muscles are relayed incorrectly from the damaged Mixed types
parts of the brain. Many children do not have just one type, but a mixture
of several of these movement patterns.
When people without cerebral palsy perform a
movement, groups of muscles contract whilst the Some of these concepts are difficult to understand.
opposite groups of muscles relax or shorten in order Please discuss them further with your therapist
to perform the movement. In children with spastic or doctor.
cerebral palsy, both groups of muscles may contract
together, making the movement difficult.

Dyskinetic cerebral palsy

This refers to the type of cerebral palsy with abnormal
involuntary movements. It is divided into two types of
movement problems, called dystonia and athetosis.

• Dystonia – this is the term used for sustained

muscle contractions that frequently cause twisting
or repetitive movements, or abnormal postures.

• Athetosis – this is the word used for the

uncontrolled extra movements that occur
particularly in the arms, hands and feet, and
around the mouth. The lack of control is often
most noticeable when the child starts to move –
for example, when the child attempts to grasp
a toy or a spoon. In addition, children with
athetoid cerebral palsy often feel floppy
when carried.

3
 Which part of the body
is affected?
Again, this varies greatly from one child to another.
Certain words are used to describe the parts affected:

Hemiplegia – the leg and arm on one side of the body

are affected (also described as hemiparesis).

Diplegia – both legs are predominantly affected.

Children with diplegia usually also have some
difficulties with their arm and hand movements.

Quadriplegia – both arms and both legs, and the

trunk, are affected (also described as quadriparesis).
The muscles of the face, mouth and throat can also
be involved.

How severe is the

movement problem?
The Gross Motor Function Classification System
(GMFCS) is a method of describing the range of gross
motor function in children with cerebral palsy. The
GMFCS describes five 'levels' of motor function, with a
particular emphasis on abilities and limitations in the
areas of sitting, standing and walking. Children with
GMFCS levels I and II walk independently, children
with GMFCS level III require sticks, elbow crutches
or walking frames, and children with GMFCS levels IV
and V usually require a wheelchair. You can see a
diagram of these different levels on the opposite page.
Using GMFCS levels and a test of gross motor function
called the Gross Motor Function Measure (GMFM),
it has been possible to draw 'motor growth curves'.
From these curves, we can begin to make a prediction
about the pattern of gross motor development of
children according to their GMFCS level.

4
GMFCS for children aged 6-12 yeas

GMFCS Level I
Children walk indoors and climb stairs without limitation.
Children perform gross motor skills including running and
jumping, but speed, balance, and coordination are impaired.

GMFCS Level II
Children walk indoors and climb stairs holding onto a railing
but experience limitations walking on uneven surfaces and
inclines and walking in crowds or confined spaces.

GMFCS Level III

Children walk indoors or outdoors on a level surface with an
assistive mobility device. Children may climb stairs holding
onto a railing. Children may propel a wheelchair manually or
are transported when traveling for long distances or outdoors
on uneven terrain.

GMFCS Level IV
Children may continue to walk for short distances on a walker
or rely more on wheeled mobility at home and school and in
the community.

GMFCS Level V
Physical impairment restricts voluntary control of movement and the
ability to maintain antigravity head and trunk postures. All areas of
motor function are limited. Children have no means of independent
mobility and are transported.

Footnote: GMFCS by Palisano et al.

Palisano RJ, Rosenbaum P, Walter S, Russell D, Wood E, Galuppi B.
Development and reliability of a system to classify gross motor function
in children with cerebral palsy. Dev Med Child Neurol. 1997;45:113–120.
Illustrated by Kerr Graham and Bill Reid, The Royal Children's Hospital,
Melbourne.
5
 What are the causes of cerebral palsy?
Cerebral palsy occurs in about two in every thousand In some children it is important to note that, despite
children. There are many different causes. A problem a careful review and various tests, the cause of cerebral
with the brain can occur: palsy remains unknown. With technologies such as
MRI brain scans and sophisticated blood tests, more
1. If the brain does not grow or form properly. The
causes are slowly being identified. Current research
result is that children may have brain malformations.
suggests that approximately 75% of all cerebral palsy
2. In the early months of pregnancy – for example, is caused by problems that occur during pregnancy,
if the mother is exposed to certain infections 10–15% by difficulties at birth or in the newborn
such as Rubella (German Measles), or period, and a further 10% by illnesses or accidents
Cytomegalovirus (CMV). in the early weeks, months or years of life.
3. During labour or at birth – for example, if the
Problems that lead to permanent neurological deficits
baby does not receive enough oxygen.
up to the age of five to six years are included in the
4. In the period shortly after birth – for example, cerebral palsy group.
when an infant develops a severe infection, such as
meningitis, in the first few days or weeks of life. Children particularly at risk for cerebral palsy
are those infants who have been born extremely
5. In children having accidents in the early years of
prematurely. It is sometimes difficult to be sure
life, causing permanent brain injury. These children
whether the neurological problem predated the
are also considered to have cerebral palsy.
premature delivery or whether the problems that
occurred due to prematurity are responsible for
the child’s cerebral palsy.

Almost all families continue to worry about the cause

and why it happened. This is understandable and a
natural response. Parents often blame themselves for
something they may or may not have done during the
pregnancy or birth. But usually the event for which the
family blame themselves is either not the cause or
could not have been prevented. It is helpful if families
can discuss the problem and share their concerns with
each other and with the people involved in the care
of their child.

6
What other problems may the child have?
Sometimes, the child may have additional difficulties. 5. Perceptual difficulties – problems such as
These could include: judging the size and shape of objects are termed
perceptual difficulties, and may not be apparent
1. Problems with hearing – all children should be seen
until school age.
by the specialist in hearing (audiologist) to check for
hearing difficulties. 6. Gastro-oesophageal reflux – food comes back up
the oesophagus (gullet) more commonly in children
2. Problems with eye sight – children with cerebral
with cerebral palsy. Symptoms may include vomiting
palsy very commonly have squints. They can also and discomfort during feeds. A complication of
have other problems with vision. Most children are gastro-oesophageal reflux is inflammation of the
checked by the eye specialist (ophthalmologist) at lower oesophagus (called oesophagitis). Children
some time during their early years. with this problem may be very unsettled or irritable.
3. Epilepsy – epilepsy may develop in about one in
7. Orthopaedic problems – as children grow and
three of all children with cerebral palsy. There are develop, muscles with spasticity or stiffness
various types of epilepsy. Some children may only may become shortened, causing muscle or joint
have very occasional seizures whereas in others the contractures. This is most likely to occur at the
problem may be more persistent, and may require ankle, knee, hip, elbow and wrist.
the advice of a paediatric neurologist.
In addition, children with cerebral palsy are at risk
4. Intellectual or learning disability – it must be
for developing hip subluxation (movement of the
stressed that there is a wide range of intellectual head of the thigh bone out of the hip socket) and
ability in children with cerebral palsy. Unfortunately dislocation. This is most likely to occur in children
it is often difficult to assess learning ability in the that are not walking independently (GMFCS levels
early years of life. Children with severe physical III, IV and V). Regular monitoring and surveillance
disabilities may have normal intelligence. If there with hip X-rays is important. Physical examination
is a delay in learning in the early years of life, the of the hips is not enough so all children with
term 'developmental delay' is sometimes used. cerebral palsy affecting both lower limbs (diplegia,
Developmental delay is a descriptive term used when quadriplegia) require regular hip X-rays (particularly
a young child’s development is delayed in one or children with GMFCS levels III, IV and V). Scoliosis
more areas compared to that of other children. (curvature of the spine) is a more unusual problem.

(Continued next page)

7
 8. Constipation – this is common in children with 13. Undescended testes. There is a higher frequency of
cerebral palsy. The cause is not always clear. undescended testes in boys with cerebral palsy.
Sometimes it relates to the lack of usual mobility,
Remember – no one child has all these problems.
or it may be related to the difficulty eating a high
There are treatments available for them which are
fibre diet.
discussed in a separate section.
9. Nutritional difficulties – some children with
severe cerebral palsy may have difficulties with
chewing and coordinating their swallowing, causing
Will my child get better?
prolonged or difficult meal times. This in turn may 'Cerebral palsy' refers to a permanent condition, and
lead to inadequate food intake. Other children have the problems associated with this condition (such
a tendency to put on weight because of reduced as muscle weakness or stiffness, and unwanted
physical activity. movements) remain throughout the lifetime of a person
10. Saliva control problems – children often dribble with cerebral palsy. However, children can learn to
in the early years of life. Dribbling can persist in cope with the condition as they grow. Treatment often
children with cerebral palsy. brings about improvement, though not a cure.

11. Recurrent chest infections – this is a problem in

only a small group of children with cerebral palsy.
It is most likely to occur in children who have
difficulties with chewing and swallowing. Some
of the food and drink may inadvertently pass in
to the lungs causing the child to cough and
wheeze. These episodes may mimic asthma.
If these episodes are severe and persistent the
child may develop recurrent attacks of pneumonia.
Of course, just like other children, those with
cerebral palsy may occasionally develop a chest
infection, pneumonia or asthma.

12. Bone disease – some children with cerebral palsy

are not able to be as active as children without
disabilities and have some degree of osteoporosis.
Fractures can occur with very minor injuries
and sometimes during normal activities such as
napkin change or putting an arm through a sleeve.
Occasionally children need special medication to
promote bone mineralisation.

8
Will my child’s condition deteriorate?
The answer is 'No'. The damage done to the brain early
in life does not worsen. Sometimes it may seem that the
child’s condition is becoming worse. There are many
reasons for this apparent deterioration and some are
listed below.

1. As children grow older, more is expected of them.

For a child with cerebral palsy, simple tasks such
as learning to dress and eat independently may take
a longer time and may be achieved later than usual.
This delay in their development might make it seem
that deterioration is occurring, but this is not
the case.

2. As the child grows and uses his muscles more and
more, they may become tighter. During growth
spurts, the child’s bones may grow more quickly
than his muscles, which can lead to a tightening of
muscles, and a problem such as toe walking may
become more apparent. Stiffness in muscles may
be due to spasticity, contractures or a mixture of
both. It can be difficult to tell the difference but it
is important to distinguish between spasticity and
shortening because they have different treatments.

3. A ny common childhood illness, such as an ear or

throat infection, can cause a child’s progress to
come to a standstill for a while.

4. Emotional stress. When a child feels he is being

'pushed' to achieve a skill, he may react by becoming
stubborn or refusing to cooperate. In a child with
cerebral palsy this can certainly be a reason for lack
of progress, but it does not mean that his condition
has deteriorated.

If your child loses previous skills, discuss this

with your therapist and/or doctor.

9
 Will my child learn to walk? Will my child be able to look
Parents generally want to know the answer to this after himself?
question shortly after the condition is diagnosed.
The aim of treatment is to encourage the child
Unfortunately, it is often not possible to be sure until
to learn to be as independent as possible. Some
after the child has been observed by the paediatrician
children who have mild cerebral palsy will have not
and therapist for a period of time. Children with mild
have any problems in achieving independence. For
cerebral palsy (GMFCS levels I and II) learn to walk
others, it will be a slow process. In some with severe
independently. Children with a moderate degree of
difficulties, considerable assistance from others will
cerebral palsy (GMFCS level III) generally walk with
always be needed.
sticks or walking frames. Children with more severe
motor problems (GMFCS IV and V) generally require It is always important to encourage your child to do
a wheelchair for most activities. Over the age of about as much as possible for himself or herself.
two years, the 'growth motor curves' referred to
earlier, are helpful in determining whether a child
is likely to learn to walk independently.

Will my child learn to talk? Will my child develop behaviour

There is a wide range of communicative ability among problems?
children with cerebral palsy. Some children will not
Over the course of their development, some children with
have any difficulties learning to talk. Other children
cerebral palsy may develop behaviours that are disruptive,
may have problems controlling the movements around
unsociable or difficult to manage. They may also become
their mouth, or delayed development of cognitive
frustrated due to being unable to move or communicate,
(learning) skills; they will need help from a speech
for example, a child with little effective speech may resort
pathologist to develop speech or to learn how to use
to screaming in order to initiate interaction with others.
alternative methods of communication.
These behaviours usually respond to modification, or
gradually recede with the emergence of a skill that allows
the child greater independence. Psychologists may be able
to assist and suggest ways to handle the child while new
skills are emerging. Every child has a unique personality
and individual ways must be developed to motivate and
encourage the child to feel good about him or herself
and to be successful and happy.

10
11
12
Will my child have a normal Will I be told everything
life expectancy? that doctors and therapists
Most children with cerebral palsy are healthy, know about my child?
and can expect a normal life span. A small group
The answer is 'Yes'. When staff have difficulty
of children with extremely severe cerebral palsy
answering questions, parents may feel that doctors
and associated conditions such as epilepsy may
be at risk of reduced life expectancy (for example, and therapists are holding back information and not
they may develop recurrent chest infections or telling all they know. However, this is not the case,
have prolonged seizures). and parents are told as much as is known about the
child at the time. A new booklet produced by the
Association for Children with a Disability, entitled
'Helping You and Your Family – Self-Help Strategies
for Parents of Children with a Disability' has
useful information about relationships with
health professionals.

Will my next child have cerebral palsy?

This is extremely unlikely, but you should discuss
this with your doctor. Parents should feel free to seek
advice from their doctor about genetic counselling and
obstetric care of future pregnancies.

What treatments are available to help my child?

This brief summary discusses both older and newer Treatment can be considered in three areas:
interventions. Many new treatments have become
1. Treatment of the movement problem.
available over the past two decades. The management
2. Treatment of the associated medical problems.
of cerebral palsy requires a team approach with the
parents, therapists, doctors, nurses and teachers all 3. Provision of therapy and early intervention services.
contributing to ensure optimal progress is made.

13
 4. Botulinum toxin A ('Botox') is used as a
What treatments are treatment for tight or spastic muscles, most
available for the commonly when tightness in the calf or hamstring
muscles is interfering with progress in learning to
movement problem? move, although it is increasingly being used in other
Paediatric therapists play a key role in the management parts of the body including the upper limbs. A light
of movement problems. Physiotherapy, and sometimes anaesthetic is required for the injections. There
occupational therapy, is essential to provide a program may be some temporary mild pain at the injection
to encourage motor development. Therapy is also site but other side effects are uncommon. Botox
necessary to implement the other strategies can reduce spasticity and provide a period of more
discussed below. normal muscle growth and development, which may
1. Orthoses (sometimes known as braces) are used be accompanied by progress in the child’s movement
by many children for the lower limbs at some stage abilities. Disadvantages include the fact that the
in their development. These are custom made and administration of Botox involves injections; the
individually fitted for each child from a combination effects of the drug are not completely predictable
of materials including high temperature plastics with and are of short duration; and the toxin is costly.
velcro closures. 5. Oral medications for spasticity include
2. Upper limb splints are sometimes made by Diazepam, Dantrolene and Baclofen. These
an occupational therapist to maintain range of medications are often not effective or may cause
movement, facilitate better grasp and improve too many unwanted effects. Hence they are
overall function of the arm and hand. These prescribed relatively infrequently.
splints, usually of plastic material, are individually • D
 iazepam ('Valium') is a good medication for
made for each child. Over recent years, a technique spasticity, but may cause sedation. However it is
of splinting with dynamic lycra splints has useful following surgery, particularly orthopaedic
been developed. These splints are often called procedures.
'second skin'.
• D
 antrolene ('Dantrium') may be helpful, but can
3. Plaster casts are sometimes applied to lower limbs rarely cause liver problems. It may also cause
to stretch the calf muscles, and to improve the drowsiness, dizziness and diarrhoea.
position of the foot during walking. The casts are
changed every one to two weeks, the child walks in • B
 aclofen ('Lioresal') is said to be more useful in
the plasters, and generally the plasters remain in use spasticity due to spinal lesions than in spasticity
for about six weeks. These plasters are sometimes due to cerebral lesions. However, it is often used
called 'inhibitory casts'. in children with severe spasticity. Side effects are
uncommon but may include nausea. It is reported to
aggravate seizures though this is a rare problem.

14
Very occasionally, a pump is implanted under the skin. The Sometimes children require orthopaedic surgery
pump is connected to a tube which delivers the drug into in several different areas (for example, hip, knee
the space around the spinal cord. This type of treatment and ankle). Frequently this now involves a single
is only suitable for a small number of children with severe hospitalisation and is called 'multilevel surgery'.
spasticity and is known as intrathecal baclofen therapy. Multilevel surgery is of most benefit to children who
walk independently or with the assistance of crutches.
6. Selective dorsal rhizotomy is a major operation on
The best age is usually between 8 and 12 years old
the spine occasionally used to reduce spasticity in the although it can occasionally be helpful for older or
lower limbs. It is used mainly in young children aged younger children. The aims of surgery are to decrease
between three to seven years, with spastic diplegia. deformities and to improve both the appearance and
Following the procedure a very extensive rehabilitation efficiency of walking. Success depends on an accurate
period is required. assessment of the walking problems, which is done
7. Orthopaedic surgery. Surgery is mainly undertaken
in the gait laboratory. A carefully planned intensive
rehabilitation physiotherapy program, which can last
on the lower limb, but occasionally in the upper limb.
for up to a year, is required to maximise the benefits
Some children require surgery for scoliosis. Physiotherapy
from this surgery.
is an essential part of post-operative management. Gait
laboratories are useful in planning the surgical program 8. Plastic surgery. Tendon transfers and releases can
for children who are able to walk independently or with occasionally improve appearance or function in the
sticks or walking frames. upper limb.

• T
 he hip: soft tissue surgery is often effective for
children when the hip problems are detected at an
early stage (hence the importance of regular X-rays).
Lengthening of the adductor muscles may be all
that is required in younger children. However,
if the problem progresses, and especially if it is
neglected, more extensive surgery to the hip bones
is required for a significant number of children.
For the majority of children surgery to keep the
hips in joint, or to put the hips back in joint, is
preferable to leaving the child with a dislocated
hip which is frequently painful in later life.

• T
 he knee: lengthening of the hamstrings can help
the knee straighten and so improve the walking pattern.
Sometimes transferring a muscle from the front to the
back of the knee can also help by reducing stiffness
around the knee.

• T
 he ankle and foot: This is the commonest area where
orthopaedic surgery is required.

15
 What treatments are available for the associated
medical problems?
1. Epilepsy. Our knowledge of epilepsy has increased Some of the older anticonvulsants are still used because
substantially in the past few years. There are many they may suit individual children or lead to better
types of epilepsy, and medication is often prescribed seizure control. These include:
following a careful diagnosis of the type of seizures
• Phenytoin ('Dilantin'). This drug has a number of
and their cause. Doctors attempt to prescribe
unwanted side effects including gum overgrowth,
medications with the aim of good seizure control
the development of abnormal body hair and
and few or no side effects.
occasionally coarsening of facial features. Allergic
The three most commonly used anticonvulsants are: rash is not uncommon. Because the margin between
a therapeutic and toxic dose is narrow, overdose may
• C
 arbamazepine ('Tegretol', 'Teril'). Potential side
occur causing nausea, vomiting, unsteadiness and
effects include nausea, loss of appetite, and allergic
drowsiness. Blood level testing is necessary.
skin rash which usually develops shortly after
commencing the drug. If the drug is commenced too
rapidly initial drowsiness may occur. A controlled
release tablet preparation is now available which is
preferable for those children able to swallow tablets.

• Sodium
 valproate ('Epilim', 'Valpro'). Potential
side effects include nausea, abdominal discomfort,
weight gain, hair loss and bruising. Liver damage
and bleeding probems have been reported but are
extremely rare.

• L amotrigine ('Lamictal' and other generics).

Lamictal is often used as 'add on' to sodium
valproate. It is well tolerated and may cause an
increase in alertness. The main unwanted effect
is an allergic skin rash which may occur in up to
5% of children, especially if the drug is introduced
too quickly. If a skin rash develops during
introduction, the drug should be ceased and
your doctor contacted. Sleep disturbance can
occur in some children.

16
• Phenobarbitone and Primidone ('Mysoline'). These • Oxcarbazepine ('Trileptal'). This drug has a
drugs can cause sedation, irritability and aggravate similar profile to carbamazepine but is often
constipation. Blood level testing is necessary. better tolerated.

• Nitrazepam ('Mogadon'). This drug may cause • Levetiracetam ('Keppra'). This is the newest
drowsiness and increased bronchial secretions. anticonvulsant being used in children with epilepsy.
It is mainly used in infants to treat epileptic It is relatively well tolerated, with behaviour
seizures spasms and tonic seizures. disturbance being the main potential side effect.

• Clonazepam ('Rivotril', 'Paxam') and Clobazam For more detailed information on anticonvulsant
('Frisium'). These drugs can cause irritability, medication, visit www.rch.org.au/cep/treatments
drowsiness and disruptive behaviour. They can
2. Gastro-oesophageal reflux. Gastro-oesophageal
also worsen drooling, especially clonazepam.
reflux (GOR) is more common in children with cerebral
There are a number of relatively new anticonvulsants palsy. GOR may result in regurgitation, inflammation of
that are used in specific situations or after other drugs the oesophagus (oesophagitis), difficulty swallowing
have failed. These include: (dysphagia), and occasionally, aspiration. Conservative
measures may help reduce GOR. These include:
• Vigabatrin ('Sabril'). This drug is used almost
exclusively to treat infantile spasms for which • propping the infant or child upright after a meal
it is very effective. Potential side effects include • thickening feeds
drowsiness, irritability and agitation. It has • slowing the rate of feeding (especially liquid feeds).
detrimental effects on peripheral vision in adults If conservative measures fail, medications may
but the effects on infants treated for brief periods be suggested. These include:
is uncertain.
• A
 nti-acid medications such as ranitidine,
• Topiramate ('Topamax'). This drug is a very effective omeprazole and lansoprazole. These will reduce
drug but side effects are not uncommon, including the acidity of the stomach and limit any damage
appetite suppression, weight loss, effects on speech produced by acid reflux. They are unlikely to
and behaviour and kidney stones. reduce the amount of reflux.

• Gabapentin ('Neurontin'). This drug is used more • P

 rokinetic agents such as domperidone. These are
commonly for pain treatment than for seizure designed to reduce the amount of reflux but are not
management these days. It needs to be taken three very effective.
times a day but is very well tolerated.
Surgery to prevent reflux is occasionally necessary
when medications have failed to control the problem.
The surgical procedure is called a fundoplication.

17
 3. Saliva control. The speech pathologist plays a
central role and can provide strategies to improve
dribbling problems. When these strategies are
not effective, medication is occasionally used,
particularly in children over the age of six years.
These medications are as follows:

• Benzhexol hydrochloride ('Artane') reduces salivary

secretions. Occasionally irritability may occur.
Blurring of vision, constipation and difficulty with
urination are also potential side effects.

• Glycopyrrolate ('Robinul') is similar to benzhexol

hydrochloride but seems to produce fewer side
effects. It is not widely available at present
in Australia.

The effectiveness of Botulinum toxin injections

into the salivary glands in reducing salivary flow,
is currently being assessed as a research project, but
this medication is not yet available for routine use.
5. Nutrition. A dietitian can provide useful advice
For older children with persistent dribbling problems,
about adequate nutrition. Excessive weight gain can
surgical treatment can be offered. The plastic surgeon
be very disadvantageous for children learning to
redirects the submandibular ducts and removes the
walk. Undernutrition and failure to make adequate
sublingual glands. This operation usually reduces
weight gains may be related to feeding difficulties.
drooling but does not lead to an unduly dry mouth.
In a small proportion of children, the use of tube
It is important that children undergoing this procedure feeding can be helpful. A separate booklet about
have regular dental follow up as there is an increased this is available.
risk of dental cavities.

4. Constipation. Children with cerebral palsy often

have problems with constipation. A high fibre
diet and increased fluid intake can help with this
problem. This may not be easily achieved in some
children with cerebral palsy. Careful use of laxatives
is preferable to severe constipation.

18
W hat thera pies a re ava ila ble to a ssist my child ?
Therapy is often incorporated in an early intervention communication skills. There are some programs
program which addresses not only the movement that apply the principles of Conductive Education
problems but aims to optimise the child’s progress in in Victoria. The professionals involved in these
all areas of development. The most commonly used programs include special education teachers,
approaches by therapists in Victoria are listed below. therapists and occasionally Hungarian 'conductors'.

1. Neuro-Developmental therapy (often abbreviated 3. Constraint induced movement therapy, often

to 'NDT' and also known as Bobath therapy) is abbreviated to 'CIMT' is a therapy for children with
a therapeutic approach to the assessment and hemiplegic cerebral palsy that aims to increase the
management of movement dysfunction in children child’s use of their hemiplegic arm and hand. This
with neurological dysfunction. The ultimate goal therapy approach has developed from studies of the
of treatment and management is to maximise the effects of constraining the non-affected arm and
child’s functional ability. The therapy was first hand of adults following stroke to 'force' the use
developed by Dr and Mrs Bobath in the 1940s of their hemiplegic arm and hand. CIMT involves
and hence is sometimes known as 'Bobath therapy'. constraining a child’s unaffected hand and/or arm
Following a thorough assessment, the treatment for a period of time, usually in a modified glove or
focuses on making desired movements more mitt, while they are encouraged to use their affected
possible and preventing undesired movements. hand and arm in play activities.
Family members and other caregivers receive
4. Goal directed training involves the child and/or
education in NDT principles to maximise quality
family identifying specific tasks that the child may
of movements and implementation of the program
need to, want to or have to do at home, school or
at home, preschool, school and in other community
in their leisure. The approach developed from our
environments.
understanding of how children learn motor skills.
2. Programs based on the principles of Conductive The therapist works with the child and family to
Education. Conductive Education is a Hungarian identify specific goals or tasks and to assess the
system for educating children and adults with child’s performance. The therapist may structure
movement disorders. In 1940, Professor Andras Peto aspects of the task or environment to optimize the
established the approach by recognising that such child’s performance. Skills required by the child are
disorders are learning difficulties to be overcome identified and developed. Repeated task practice is
rather than conditions to be treated. Conductive an important part of the approach and requires
Education provides an integrated group program the child and family to be active partners in the
where children and their carers/parents learn to therapy process.
develop skills in all areas of life, for example, daily
living, physical, social, emotional, cognitive and

19
 What do parents need?
The impact on parents of having a child with any sort 3. Information about services and assistance in gaining
of difficulty can never be underestimated. Parents may access to them.
experience emotions such as anger, grief, a sense of
4. Information and skills to help them assist their child
disbelief and feelings of isolation. These emotions are
in the best possible way.
often very intense at the time of diagnosis and may
recur over time. 5. Having a break. Time off from childcare is important
for most parents. When the child’s daily needs place
Children with severe cerebral palsy may need a lot
extra demands on time and energy this is even more
of assistance with daily living skills such as eating,
important. A break enables families to have a rest
bathing and dressing, placing enormous stress on
and to spend time doing other things.
the family.

There are a large number of hidden financial

costs. These include visits to doctors and other What shall I tell my friends
professionals, special equipment, maybe extra
nappies and extra childcare.
and relatives?
It is sometimes difficult to know what to tell your
All parents will have their own individual needs. relatives and friends. A simple explanation is often
However, for most parents their needs will include: all that is required: that your child has difficulty in
controlling his muscles, and that his progress in some
1. Having their questions answered. It is sometimes
areas will be slower.
helpful if parents write down the questions they
want answered when they see someone to discuss
their child’s needs.

2. Support in understanding the nature of their child’s

problems. This support will include the opportunity
to share the feelings, hopes, and fears they have
for their child. Support may be from other family
members, friends, parents with similar experiences
and professionals.

20 20
What about the rest of Who is available to help
the family? my child?
Sometimes it may seem impossible to fit all the A number of professionals work with children with
activities suggested into the daily schedule. Parents cerebral palsy and their families. Depending on needs,
may then feel guilty that they have insufficient time some children may be seen by all of these people,
to carry out therapy programs with their child. All others only by one or two. Different professionals will
parents face the same problem and it is important to be helpful at various stages of the child’s development.
set aside time with your partner or other children as Some of the people involved are:
well. The special needs of brothers and sisters must not
1. The parents. Parents are the most important people
be overlooked, and it is understandable that sometimes
of all as they know most about their child. All
they might feel jealous or left out because of the extra
children need the love and security parents provide.
attention given to the child with a disability. Sibling
In day to day family life parents will incorporate
groups are organised by several organisations where
many of the suggestions made by therapists and
brothers and sisters of children with disabilities, get
teachers into the daily routine.
together to share experience and gain support.
2. The family doctor/general practitioner. Children
Hurtful comments or teasing can be a problem for both
with cerebral palsy have the same health problems
the child with cerebral palsy, for brothers and sisters,
as other children of a similar age. They are just
and for the rest of the family. 'Spastic' has become
as likely to develop coughs and colds and other
an unfortunate term because it can be used in an
common childhood illnesses. The family doctor
unpleasant way. However, to doctors and therapists,
will help with these problems. General practitioners
the word simply means stiffness or tightness of
may also know the whole family and be able to
muscles. There are ways of coping with teasing, and
provide support and encouragement.
further written material is available about this subject.
3. The paediatrician. This is the doctor who
Sometimes the difficulties seem overwhelming.
specialises in children’s health and development.
Remember that you are not alone and that help and
Paediatricians can provide advice regarding the
people who understand are always available: other
special health problems that occur in children with
parents, parent support groups, and all the people
cerebral palsy, such as epilepsy. The paediatrician
who work with your child.
works closely with all the people who are involved
in helping children with cerebral palsy, and can
make referrals to other specialists as necessary.

4. Other medical specialists may at times be helpful

including paediatric neurologists, gastroenterologists,
endocrinologists, respiratory physicians and
orthopaedic surgeons. (Continued next page)

21
 5. Nurses provide assistance in various ways. Maternal a) The physiotherapist advises parents on ways to
and Child Health nurses monitor children’s early encourage children to move, and to develop skills
development and provide support to parents. School such as sitting, crawling and walking. Practical
nurses, either in mainstream or special schools, advice on ways to lift and carry children, and on
are able to address everyday health issues such as positioning children for play and eating, can also be
bowel and bladder management. Some nurses have given. The physiotherapist may also give advice on
specific expertise in continence and/or stomal suitable footwear, splints to improve children’s foot
therapy and can be a useful resource. Community posture and gait, and equipment such as supportive
nurses, whether in hospitals or community health chairs and standing and walking frames.
centres, may provide advice in areas such as epilepsy
b) The occupational therapist specialises in hand skills
management and constipation. The Royal District
and activities of daily living, and advises about play
Nursing Service supports families at home following
and appropriate toys. Occupational therapists also
orthopaedic procedures or where other ongoing
suggest easier ways of bathing, feeding, dressing and
medical or nursing interventions are required.
toileting. As children become older, occupational
Nurses may also be helpful in liaising with and
therapists help them to become more independent
obtaining appropriate health care services.
in these self-care tasks. They also assist children to
6. Paediatric therapists are skilled in working with acquire skills needed for kindergarten and school
children with cerebral palsy and provide assessment, (such as handwriting).
advice and/or treatment. They may work with
c) The speech pathologist sees children with difficulty
children and their parents either individually or
talking or understanding speech. Advice is given to
in small groups. Those most commonly assisting
families on how to encourage speech and language
children with cerebral palsy are physiotherapists,
development. Some children may need to learn an
occupational therapists, and speech pathologists.
additional or alternative means of communicating,
Not every child needs to have assistance from all
such as using hand signs or a communication book
of these people. However, they often work together
with words or pictures. Children with cerebral palsy
in planning or providing treatment.
may have difficulties with eating and drinking due to
Therapists aim to teach parents how best to help poor control of the muscles of the mouth, face and
their children learn to move and acquire all the throat. They may dribble excessively at times. The
practical skills needed for living. All young children speech pathologist can help with these problems.
learn through play and this principle is used when
7. The social worker can provide information
advising parents about the best way to encourage
about services and entitlements and can help find
their child’s development.
appropriate early childhood intervention programs,
The special areas in which each therapist works are kindergartens and schools. The social worker can
as follows: also provide information for parents who wish to
meet others with similar experiences.
(Continued next page)

22
23
 Most importantly, social workers can provide The orthotist will provide information on suitable
counselling and advocacy support. You can talk footwear types and providers and may also be
to social workers about your child and discuss any involved in the modification of some equipment.
problems or worries that you and your family
11. The dentist. Dental care is very important for
are experiencing.
your child. Regular check-ups and help with tooth
8. The psychologist is concerned with progress in brushing and preventing dental decay can be sought
learning and emotional and social development. from either your local family dentist or the School
The psychologist may be available to help if there Dental Service through Dental Health Services
is concern about a child’s emotional well-being and Victoria; depending on where you live there are
behaviour or difficulties within the family. experienced dentists who visit local schools.
Alternatively, you can ask your paediatrician to
9. Special education teachers work in a variety of
refer you to the Dental Department at The Royal
settings, including family homes, early intervention Children’s Hospital. While the Dental Department
programs, preschool settings (kindergarten and child may not be able to provide your child with ongoing
care centres), playgroups and special schools. regular care it will be able to refer you on to the
Special education teachers provide support to most appropriate place to seek care.
families by:
12. The audiologist tests children’s hearing to make
• Helping families understand more about their child’s sure they can hear well enough to learn to speak
disability and the impact it may have on learning and understand language. Some children with
and development. physical disabilities, and very young infants, cannot
• Establishing individual therapy/education respond consistently to sound. They sometimes
program plans. cannot show us how much they hear. Audiologists
• Supporting the child and staff in the child’s have special tests to measure the hearing of such
participation in local kindergarten and child care children. If deafness is detected the audiologist
programs. works with the ear specialist (otolaryngologist) to
improve children’s hearing. If that is not possible
• Assisting with the child’s successful transition to
the audiologist will arrange for hearing aids to be
school and post-school options.
fitted and advise parents in their use.
10. The orthotist works closely with the physiotherapist
All of these professionals may assist families to
and doctors to determine appropriate bracing for
develop advocacy skills. However, parents may
those children that need it. The orthotist is the
choose their own advocate to accompany them to
person who designs and makes the braces for the
meetings and appointments to provide support.
children and who is responsible for all ongoing
alterations and adjustments to improve fit and
function of the brace as the child grows.

24
What is advocacy?
Some families who have a child with cerebral
palsy feel they need someone to help them
gain access to services or insist on their child’s
rights. This service is known as advocacy. An
advocate works alongside the family, often
attending important meetings with them and
sometimes speaking on their behalf. People
involved in the care of the child, a Case
Manager, a friend of the family, or a special
'advocate' may be used. Sometimes an advocate
can be provided by one of the disability support
groups. An advocate also helps the family or
the person with a disability develop the skills to
speak confidently for themselves.

What are the current trends

in the provision of services?
Children with cerebral palsy benefit from the same
activities as other children. Hence a child may attend a
local playgroup or childcare centre, and progress on to
a local preschool and school. It is important the child
receives the extra assistance that may be required.

There has been a trend for specialised services to be

available within local communities. Staff may work with
children and families at home and later in playgroups,
childcare centres and kindergartens.

Some children may benefit from attendance at a

specialised program. Specialised programs are
provided by a variety of agencies, and may include
early childhood intervention programs, preschools and
schools. It is important that parents are aware of all
available programs.
25
 Which organisations are helpful?
Children with cerebral palsy can use any of the Disability Client Services provides access to a range
regular early childhood and children’s services such of services for children and their families, including
as maternal and child health centres, playgroups, child assessment, case management and respite care. Contact
care centres, family day care, kindergartens the Association for Children with a Disability for
and schools. information about your local service:

There are also a large number of organisations, ( 9818 2000

Government and non-Government, that can provide ( 1800 654 013 freecall (for rural families)
additional help. Early intervention and school services 2. Hospitals
may include special education, therapies, family Therapy services are provided through some hospitals,
support, parent education, parent-to-parent contact, particularly The Royal Children’s Hospital and the
and assistance to the childcare centre or kindergarten. Monash Medical Centre, but also through a number
Details of all local agencies are available through the of other metropolitan and rural hospitals. Hospitals
web sites of Early Childhood Intervention Australia may also assist families of children with cerebral palsy
Victoria Chapter (www.ecia.vic.org.au) and the through provision of medical and surgical services at
Association for Children with a Disability, which is various clinics, and through other departments such
further detailed below (www.acd.org.au). Many of the as social work and psychology. The Royal Children’s
same organisations continue to provide assistance to Hospital Department of Developmental Medicine
school-age children, although some are restricted to the conducts information sessions for parents and families
preschool (early childhood intervention) years. Below at regular intervals.
is a list of some of the organisations that are helpful.
3. The Yooralla Society of Victoria, Scope
1. Department of Human Services and the Villa Maria Society
Every region has a Specialist Children’s Services All provide therapy, educational, respite and
Department with an Early Childhood Team that recreational programs for children, particularly those
provides early childhood intervention services. with cerebral palsy and with other physical disabilities.
This team can assist families to find and use other
For the Yooralla Society of Victoria, contact
local services. Children aged six years and over who
Early Intervention or School Aged Services:
have an intellectual disability in addition to a physical
disability are eligible to receive services from Disability ( 9650 4077
Client Services of the Department of Human Services. For Scope:
( 9843 3000 Box Hill
( 8311 4000 Glenroy

For the Villa Maria Society:

( 9854 5111
or 1800 036 377

26
4. Association for Children with a Disability 5. Cerebral Palsy Support Network
The Association for Children with a Disability The Cerebral Palsy Support Network aims to empower
provides information, support and advocacy to persons with cerebral palsy and their families, and also
families who have a child with any type of disability raise awareness of the issues that persons with cerebral
or developmental delay in Victoria. Services include palsy and their families experience. All persons
free telephone support on any issue that relates to on the committee are volunteers who either have
having a child with a disability including aids and cerebral palsy or have a family member with cerebral
equipment, education, respite, and recreation. All of palsy. The Cerebral Palsy Support Network provides
the Parent Support Workers are parents of children disability-specific information in a quarterly newsletter,
with a disability and so understand issues from a family telephone information and support, information
perspective. Information resources available to families seminars, a website with links and on line services
include the booklets ‘Helping You and Your Family’ ([email protected]), support groups in local metropolitan
and ‘Supporting Siblings’ as well as information sheets areas, community awareness events, equipment trials,
on a range of topics. The Association also advocates respite brokerage program and family social activities.
for improvements to government policies and works ( 9300 3901 or
to increase community awareness about the needs of Email: [email protected]
families of children with a disability. Members receive
6. Noah’s Ark Toy Library and Family Resource
the bi-monthly NoticeBoard magazine which includes
Noah’s Ark provides early childhood intervention
family stories and other information. They may also
programs, family support, loan of specialist resources
advertise to sell or buy second-hand equipment on
including toys and equipment, sibling groups and
the 'Classifieds' page of the Association website
recreation programs. There are five metropolitan and
www.acd.org.au
ten rural sites.
Membership costs $15 for families ($5 low income) or
For further information:
$30 for organisations and professionals. The website is
( 8517 0600
www.acd.org.au
7. Cerebral Palsy Education Centre
For more information:
This Centre provides specialised early childhood
( 03 9818 2000
intervention services to families who have a child
or 1800 654 013 (rural callers only)
with cerebral palsy or similar motor disability.
Email: [email protected]
The services are provided by physiotherapists,
occupational therapists, speech pathologists and
a conductor. The services include family support,
educational group programs, advice on equipment,
individual therapy, and training and support in the
community. The Centre is located in Glen Waverley.

( 9560 0700
Website: www.cpec.com.au

27
 8. Inclusion Support Scheme Commonwealth Carer Respite Centres:
Assists children with additional needs to access long Commonwealth Carer Respite Centres can provide
day care, occasional care, family day care, before information and advice to carers about respite
and after school care and school holiday programs. options and can help with organising planned
Inclusion Support Facilitators are the primary workers. respite and the purchase of short term or emergency
For information about your local service contact your respite services. Respite can be provided in home
local council or the Association for Children with a and out of home and provides unpaid carers/parents
Disability, with a break from their usual caring role. Respite
( 9818 2000 can include such things as recreational programs
( 1800 654 013 freecall (for rural families) for the person with a disability, for example, camps,
school holiday programs and weekend activities,
9. Preschool Field Officer (PSFO)
facility based respite care and in home respite so
Provides information, support and advice to parents
the carer can attend to other interests and needs.
and preschool staff, assistance in developing individual
You can contact your local Commonwealth Carer
programs and transition to school. Additional assistance
Respite Centre:
for children with severe disabilities for kindergarten
( 1800 059 059
inclusion support are also available. Your kindergarten
teacher or PSFO can provide information and discuss 12. Parent Support
this assistance. Together you can attend the annual This may be provided by consumer organisations
regional briefing organised by the regional advisory such as:
group convenor to learn more about this program. • Association for Children with a Disability
Contact the Department of Human Services to find (see page 27)
out who convenes your regional advisory group.
( 9818 2000
10. A.D.E.C. ( 1800 654 013 freecall (for rural families)
Action on Disability in Ethnic Communities can provide
support to families and people with a disability from • Cerebral Palsy Support Network
non-English speaking backgrounds. (see page 27)

( 9480 1666 • Regional Parent Support Programs

11. Respite Contact the Association for Children with a Disability
In home respite: local councils through their for further details.
specific home help or respite care service can
• Local informal support groups.
provide family assistance and in home care for a
child with cerebral palsy. Local government may
also provide limited out of home respite services.
Contact your local council.

28
13. Flexible Support Packages
Flexible Support Packages aim to provide assistance
with planning and flexible funding to meet individual
needs, particularly for families who have a child with
high support needs, and can include Early Childhood
Intervention Services (ECIS) packages (0–6), as well
as programs known as Early Choices (0–6), Making a
Difference (6+), and Support and Choice (all ages).

For more information about the range of support

available through Flexible Support Packages contact the
Association for Children with a Disability:
( 9818 2000
( 1800 654 013 freecall (for rural families)

To apply for a Flexible Support Package contact your

regional Disability Intake and Response service.

14. Equipment and Aids

Equipment and aids can sometimes be borrowed from
local hospitals. Funding for purchasing equipment is
provided through a State Government program called
VAEP (Victorian Aids and Equipment Program). There
is generally a waiting list for VAEP so you need to
remember this when applying for equipment and
think ahead about future needs.

29
 • Yooralla’s Equipment Services has three programs:

– T
 he Independent Living Centre provides advice,
assessment and information on daily living aids
and equipment.

– T
 he Equipment Library houses assorted equipment
and aids, and complements the Independent Living
Centre with a loan service.

– C
 omTEC provides resources and advice in the use of
specialised technology by people with disabilities.
ComTEC therapists provide individualised
assessment of needs. ComTEC also has an enquiry
service; an outreach service and an electronic
equipment library (hire fees apply).

The Electronic Communication Devices Scheme is

co-located with these services at the Brooklyn site.
The Electronic Communications Devices Scheme,
part of the Victorian Aids and Equipment program,
provides communication devices to people of all ages
with complex communication needs. Devices, repairs,
training and follow up, are provided free of charge to
residents of Victoria with a permanent disability.

For further enquires about these programs, contact

Yooralla’s Equipment Services:
( 9362 6111

• Mobility Plus provides equipment and services

which enhance the quality of life for people with
disabilities including a wheelchair service centre
and customised seating
( 9495 1955

• The Equipment Recycling Network sells good second

hand equipment for people with disabilities.
( 9879 5211
Website: www.erni.asn.au

30
• TADVIC (Technical Aid to the Disabled) has volunteer 17. Financial Assistance
members who design, construct or modify equipment The Commonwealth Department of Social Security
for people with disabilities provided no commercially provides a number of allowances and pensions for
available product or service will meet their needs. eligible families and people with a disability.
There is no charge for the TADVIC service and clients Some of these are:
are only asked to reimburse the volunteer for any cost • Carer Allowance
of materials and traveling expenses incurred. • Carer Payment
( 9853 8655 • Disability Support Pension
• Continence Foundation of Australia Resources Centre (for people aged 16 years of age and older)
( 9816 8266 • Mobility Allowance (for people aged 16 years
or 1800 330 066 of age and older).
15. The Companion Card Apply to Centrelink for these allowances. Centrelink
This is for persons with a lifelong disability who require has a central number for persons with disabilities and
a companion to enable them to access activities and their families.
venues. The cardholder’s companion may be admitted ( 13 27 17
at no cost.
( 1800 650 611

16. Disability Online Victoria

This is a key resource for people with a disability,
their families and their carers.
( 1300 650 865
Website: www.disability.vic.gov.au

31
 Where will my child go
to school?
Choosing the most appropriate school can take
considerable time and planning when your child
has cerebral palsy.

There are several options available. All children are

entitled to an education through their local primary
school. This entitlement is known as inclusion, where
the special resources for the child are made available
to the local school. A small number of schools provide
more specialised programs for children with special
needs. Workers who know your child well, such as
your therapists, pre-school teacher or paediatrician,
will be able to provide information and support during
the process of choosing a school. The final decision
should be yours.

Schools may request assessment reports to establish

your child’s needs and your doctor or therapist can
ensure these are performed and made available to you
to provide to the school.

Regional offices of the Department of Education

provide information and resources about schooling
for children with cerebral palsy. There are several
publications that may be useful for families including
the ‘Program for Students with Disabilities and
Language Support Program Handbook’, which is
available from the new Department of Education
website www.education.vic.gov.au
See http://www.education.vic.gov.au/aboutschool/
lifeatschool/studentswithdisabilities.htm
which then links to the actual booklet itself via:
http://www.sofweb.vic.edu.au/wellbeing/disabil/
index.htm

32 31
What about different Is any research being
approaches to treatment? carried out?
Every child is an individual. Just because a particular In Australia and many other parts of the world there
child is receiving one type of therapy does not mean is research into the causes of cerebral palsy. Research
that another child needs the same therapy. Therapists is also being carried out to help find the best methods
and paediatricians keep up-to-date with the latest of management and treatment. The Royal Children’s
treatment approaches, and are happy to discuss Hospital has a substantial cerebral palsy research
different approaches with parents. program, spread over several different departments
of the hospital.
There are many non-mainstream (or ‘alternative’)
treatments available and parents should always feel free The Victorian Cerebral Palsy Register, housed in the
to enquire about them, both from the practitioners of Department of Developmental Medicine, collects
these therapies and from the child’s paediatrician and basic information about all people with cerebral
paediatric therapists. Sometimes great claims are made palsy born in Victoria since 1970. The register is
for alternative approaches. extremely important in enabling us to determine how
the incidence of cerebral palsy has been changing
These claims are not always justified. Every parent
over time in Victoria. It also allows us to better
and professional wants the best outcome for children
understand any trends in the type and severity of the
with cerebral palsy, so families can be reassured that
movement disorder in cerebral palsy, and to advance
any new treatment that is of value will be assessed
our knowledge of the multitude
and incorporated in to mainstream practice. There is
of factors that appear to increase
currently no evidence that suggests alternative methods
the risk of cerebral palsy. For
are better than conventional therapies. It is important
further information, contact the
that both parents and professionals keep an open mind
Department of Developmental
about new approaches but also be prepared to critically
Medicine on 9345 5898 or email
examine their claims.
[email protected]
The web address is
www.rch.org.au/devmed

In March 2006, 'Solve! At

the RCH' was launched, an
initiative of the Department
of Developmental Medicine.
The aim of 'Solve! At the RCH'
is to research the causes and
improve the outcomes for
children with disabilities.

33
 In conclusion
• Focus on what your child can do and how
his or her capabilities can be developed to
their maximum.

• Your child needs the same love, care and

acceptance as all children. However severe the
cerebral palsy, your child is more like other
children than unlike them and obtains the same
enjoyment from play and pleasurable activity.

• Be optimistic about your child’s progress, yet

be realistic when the problems are severe (this
is, of course, often a difficult balance to achieve).

• Good cooperation between parents and

professionals will help the child achieve
independence. The greatest achievement,
however, is the development of the child into
a mature person able to adjust to life.

34
Other publications and
websites that may
be helpful
• Cerebral Palsy A Practical Guide
Marion Stanton. 1992. Optima.

• Children with Cerebral Palsy – A Parent’s Guide

Edited by Elaine Geralis. 1998. Woodbine House.

• Handling the Young Cerebral Palsied Child at Home

Nancy Finnie. 1997. Butterworth-Heinemann.

There are many websites for information

about cerebral palsy.

The Wikipedia page at: http://en.wikipedia.org/wiki/

Cerebral_palsy includes good general information and
also interesting material about famous people who have
cerebral palsy.

For Australian material, The CP Australia website

provides useful information:
http://www.cpaustralia.com.au as does the
The Cerebral Palsy Association of Western Australia
at http://www.cpawa.com.au/index.php?page=1
They have a booklet called “How can I help?”
which you can find at:
http://members.iinet.net.au/~scarffam/cpa.html#start

For listservs to provide support, it is recommended that

you look at Hemi-kids at: http://www.hemikids.org

35
36
ERC 080121 Updated February 2008