The role of botulinum toxin in the treatment of cerebral palsy
Introduction
Cerebral palsy is caused by damage to the brain that takes place before, during or in the early days after birth. The reasons for this happening are varied and many are not fully understood, but the damage that occurs can affect the child in different ways.
When the brain is damaged in this way, many children have what is called 'spasticity', where their arms and legs feel stiff and are difficult to move. Some movement may be possible, but it tends to be quite limited and it prevents them from independently joining many of the activities in which children participate.
Doctors sometimes recommend botulinum toxin as a treatment to help this spasticity in children aged two years or older.
This booklet has been written to help you and your child understand why the doctor has recommended botulinum toxin injections. It explains what botulinum toxin is, how it is used, how it works and what effects it has.
At the end of the booklet there are some questions that other parents and children often ask and answers that you may find useful.
If there are questions that are not answered in this booklet, or answers that you do not understand, then talk to your doctor or nurse as they are there to help both of you.
Other members of your family and even friends may also find this booklet helpful and copies are available for you to give to them if you think it would be useful.
Frequently asked questions about botulinum toxin
What is botulinum toxin?
Botulinum toxin is produced naturally by the bacterium Clostridium botulinum. This bacteria is associated with causing botulism, a rare form of food poisoning, but in tiny, controlled doses, purified botulinum toxin is used to relax excessive muscle contraction or spasticity.
What is botulinum toxin used for?
Botulinum toxin is licensed to treat the 'tip-toe' walking in children with cerebral palsy that results from spasticity of the leg muscles. It is also used in other muscle groups and for the purposes of effective personal hygiene and care.
How does botulinum toxin work?
Botulinum toxin has an effect on the nerves at junctions with muscles. There is a chemical 'messenger' called acetylcholine that is released from the nerve endings to make the muscle contract; botulinum toxin stops this release happening.
Botulinum toxin helps to reduce some of the excessive muscle contraction and so the muscles become less stiff.
Why does my child need botulinum toxin?
Botulinum toxin, together with physical treatment, i.e physiotherapy, will allow your child to have greater movement and flexibility in their affected limb or limbs. Sometimes the injections also reduce any pain present in the muscles and improve the range of movement in that limb.
Following injection with botulinum toxin your child may be able to achieve new postures, for example, to place their foot flat on the floor which will make walking easier and more comfortable.
It is important to discuss and agree clear aims with your child and their physiotherapist.
Where is botulinum toxin injected?
Botulinum toxin is injected into the affected muscle or muscles.
How often does my child need to be injected with botulinum toxin?
The number and frequency of injections will vary depending on the severity of the spasticity and the muscles that need to be treated.
How long will botulinum toxin take to work?
Botulinum toxin takes effect gradually within two weeks. Its effect will last for up to 16 weeks, and cause weakness in the muscle for three-four months in most cases, sometimes longer. Children who walk on their toes may gain a walking pattern of heel-toe within two to four weeks after an injection into the calf muscle.
Are there any side-effects of botulinum toxin?
As with all medicines there are possible side-effects, however, normally treatment is well-tolerated. In clinical studies, some patients experienced leg muscle weakness, falls, abnormal walking, incontinence, diarrhoea and vomiting. If side-effects are seen they are usually mild and temporary.
The information leaflet in the medicine pack tells you more about the possible side-effects. If the side-effects are a problem for your child, then you should tell your doctor or nurse.
What happens after the injection?
After the injection your child will be seen by the physiotherapist who has an important role in helping your child to use those muscles that have relaxed in a new way.
Sometimes a child may need splints. Occasionally a short period of time in plaster is needed to encourage the joints to move freely. Some children may require corrective surgery. All this will be explained to you before treatment begins with botulinum toxin.
How often will we have to come back to the hospital?
After the injection a follow-up appointment will be made to see how successful the injection has been and the treatment may or may not be repeated.
Frequently asked questions by parents
Is botulinum toxin a new medicine?
No, botulinum toxin has been used successfully as a medicine for over 15 years.
Will botulinum toxin cure cerebral palsy?
Botulinum toxin is only one drug treatment used in the management of cerebral palsy. Botulinum toxin is not a cure and may not be suitable for all children with cerebral palsy.
What if the injection is too painful for my child?
Your doctor or nurse can use an anaesthetic cream to dull the prick of the needle or give your child a medicine to help relieve any pain. For very young children, or those who require a number of injections, the doctor can give a light sedative which will relieve any anxiety that your child may have at the time of treatment.
If my child doesn't like the injections, can we have botulinum toxin in another way?
No. Botulinum toxin is only available as an injection.
What is the maximum number of injections that my child can receive?
The number of injections will depend on the severity of the spasticity, the number of muscles affected and how successful the injection has been.
Who can I talk to about my child's cerebral palsy and botulinum toxin treatment?
You can talk to your hospital doctor or nurse, or any of the health professionals involved in your child's care. They will all be able to help you throughout the treatment. There are also various organisations that offer support and useful sources of information (see back cover).
Frequently asked questions by children
Does botulinum toxin have to be injected?
Yes it does, botulinum toxin is not available as a tablet to swallow.
Will the injection hurt me?
Everyone is different in how they feel about injections. Some children find that the injection hurts a little, and others are not concerned about it at all. If it is a problem then your doctor may offer you a cream or a medicine to help stop any pain.
Does it take a long time to have the injection?
The injection will only take a few minutes.
Do I have to come to hospital for my treatment?
Yes you will. Your doctor or nurse will tell you and your parents when and where this will happen.
Further help and support
SCOPE: CEREBRAL PALSY HELPLINE
PO Box 833
Milton Keynes
MK12 5NY
Telephone: 0808 800 3333
Website: www.scope.org.uk
HEMIHELP
Telephone: 0845 120 3713
Website: www.hemihelp.org.uk
