Botulinum Toxin for Muscle Spasticity in Children with Cerebral Palsy

This leaflet is about the use of botulinum toxin type A for the treatment of muscle spasticity, for children with cerebral palsy. It is injected into the affected muscle (this is called an intramuscular injection), which is done by a health professional.

This leaflet has been written specifically about the use of this medicine in children. Keep it somewhere safe so that you can read it again.

Name of drug: Botulinum toxin

Brand names: Botox^®, Dysport^®, Xeomin^®.

Why is it important for my child to take this medicine?

Muscle spasticity occurs when muscles contract too much and do not relax. This can make walking and daily activities such as dressing difficult and possible painful. When botulinum toxin is injected into the muscle, it blocks the effects of a chemical messenger called acetylcholine that is released from the nerves to make the muscle contract. The botulinum toxin helps the muscle to relax, which should make daily activities easier and less painful. The effects of an injection last for a few months.

What is botulinum toxin available as?

Intramuscular injection (given by a health professional).

How is it given?

Botulinum toxin is given by intramuscular injection into the affected muscle. Often more than one injection is given. Injections are usually done at a hospital clinic.

The health professional will talk to you about which muscles are tight or in spasm and identify them, discussing how many injections are needed. They may use an ultrasound machine to decide where is best to do the injections.

The injection is done quickly but may cause some pain as it goes into the muscle. Your child can have a sedative or anaesthetic to help them relax during the injection. You should discuss this with the health professional who is doing the injection.

When should the medicine start working?

You will notice that the muscle is less tight about 2 weeks after the injection. For most children, the effects of the injections last for 4 to 6 months.

Are there any possible side-effects?

We use medicines to make our children better, but sometimes they have other effects that we don’t want (side-effects).

Are there side-effects you must do something about?

Are there any other side-effects you need to know about?

Your child may have flu-like symptoms a few days after the injections (headache, aches and pains, fever [temperature above 38^oC]), diarrhoea, sickness (vomiting) of may feel drowsy. If you are concerned, contact your healthcare professional or doctor.

Your child may get itching, rash, pain or bruising at the site of the injection. If the injection is made into muscles near the hip joint, your child may have trouble controlling their bladder and may wet themselves (incontinence).

This is likely to be at its worst about 2 weeks after the injection and should then improve over the next 2 weeks or so.

If it continues, we advise you to contact your doctor.

Can other medicines be given at the same time as botulinum toxin?

You can give your child medicines that contain paracetamol or ibuprofen, unless your doctor has told you not to.

Botulinum toxin should not be given at the same time as some medicines that you get on prescription. Tell the health professional doing the injection about any other medicines your child is taking before the injection.

Check with your doctor or pharmacist before giving any other medicines to your child. This includes herbal or complementary medicines.

Is there anything else I need to know about this medicine?

You may have heard that botulinum toxin type A comes from the bacterium Clostridium botulinum, which has associations with a rare but serious form of food poisoning called botulism. However, the amounts used in medical treatments are very small and it is safe and effective as a medicine when used in this way.

Botulinum toxin has been used to treat various conditions in adults for more than 20 years. Formulations for children have only become available more recently.

Botulinum toxin injections are most commonly used in the treatment of muscle spasm in children with cerebral palsy but may also be used for other conditions (e.g. dystonia or salivary control).

Contact numbers

Your doctor, pharmacist or physiotherapist will be able to give you more information about botulinum.

University Hospital North Tees

Dr Kurup’s Secretary on telephone number: 01642 644541

Opening hours: 9:00am to 3:00pm (Monday to Wednesday)

Children’s Ward

Telephone number: 01642 624546

Out of hours and during weekends.

Information used in the development of this leaflet

Medicines for Children: Botulinum toxin for muscle spasticity, version 1.2, November 2011, revised June 2013, Neonatal and Paediatric Pharmacists Group (NPPG), Royal College of Paediatrics and Child Health (RCPCH) and Well Child 2011. https://www.medicinesforchildren.org.uk/botulinum-toxin-muscle-spasticity-0

Comments, concerns, compliments or complaints

Patient Experience Team (PET)

We are continually trying to improve the services we provide. We want to know what we’re doing well or if there’s anything which we can improve, that’s why the Patient Experience Team (PET) is here to help. Our Patient Experience Team is here to try to resolve your concerns as quickly as possible. The office is based on the ground floor at the University Hospital of North Tees if you wish to discuss concerns in person. If you would like to contact or request a copy of our PET leaflet, please contact:

Telephone: 01642 624719

Freephone: 0800 092 0084

Opening hours: Monday to Friday, 9:30am to 4:00pm

Email: [email protected]

Out of hours

Out of hours if you wish to speak to a senior member of Trust staff, please contact the hospital switchboard who will bleep the appropriate person.

Telephone: 01642 617617

Data protection and use of patient information

The Trust has developed Data Protection policies in accordance with Data Protection Legislation (UK General Data Protection Regulations and Data Protection Act 2018) and the Freedom of Information Act 2000. All of our staff respect these policies and confidentiality is adhered to at all times. If you require further information on how we process your information please see our Privacy Notices.

Telephone: 01642 383551

Email: [email protected]

Leaflet feedback

This leaflet has been produced in partnership with patients and carers. All patient leaflets are regularly reviewed, and any suggestions you have as to how it may be improved are extremely valuable. Please write to the Clinical Governance team, North Tees and Hartlepool NHS Foundation Trust, University Hospital of North Tees, TS19 8PE or:

Email: [email protected]