The role of Botulinum Toxin

  • Reference Number: HEY-258/2019
  • Departments: Paediatrics, Physiotherapy

Introduction

This leaflet has been produced to give you information about your child’s treatment and will hopefully answer some of your questions.  It is not intended to replace the discussion between you and your child’s therapist, but may act as a starting point for discussion.  If after reading it you have any concerns or require further explanation, please do not hesitate to contact the hospital physiotherapist on telephone number (01482) 674532 or your child’s own physiotherapist.

What is Botox®?

Botox® is the trade name for Botulinum Toxin, a protein produced from the bacteria Clostridia. This toxin works by preventing nerve impulses from reaching the muscle, resulting in the relaxation of overactive muscle, such as may be seen in cerebral palsy and other conditions.  The effects can be felt 24 to 48 hours after the injections.  The peak effect occurs at 2 weeks and this lasts between 3 to 6 months, although the benefits may last longer. Injections are repeated on a yearly basis if required.

Once the overactive muscles that are causing the posture and movement difficulties have been identified and injected, your child will require a period of rehabilitation.  This will help you / your child to learn how to adopt a better posture or move more appropriately.  Botox® is also useful for helping to maintain muscle length during growth spurts.

How is it given?

If you consent to your child having Botox® injection(s), your child will then be placed on a waiting list.  Whilst on that list it would be helpful if you could inform the hospital if you book any holidays.  You will be contacted once a date becomes available and your child’s physiotherapist will be informed if you accept that date. Your child will then be offered an appointment to attend the hospital before your child’s injection date in order to meet the nursing staff and / or play therapist who will explain the procedure and learn about your child. The hospital physiotherapist will also contact you before your child comes into hospital and offer your child an appointment to assess your child’s movement and learn about your child’s current physiotherapy programme.

On the day of the injection(s) you and your child will be asked to come to the children’s ward, where you will meet the anaesthetist and the surgeon who will be performing the injections.  The injections are done in theatre under a light general anaesthetic to ensure you remain still.  The surgeon uses a device called a nerve stimulator to check the needle is in the right place and then the injections are given.  A sticking plaster will be placed over the injection sites.

On returning from theatre your child will go back to the ward. Your child will be allowed to go home the same day as the injections are given once your child has rested and eaten.

What to expect after the Botox Injection®?

There may be a slight local tenderness or bruise at the site of the injections but this will not last long. Due to the anaesthetic it is advisable to avoid school and any sporting activity for the rest of the day.  Following this, normal activities may be resumed.  Studies have shown that moving the injected muscle helps to spread the Botox® within the muscle thereby maximising the effects. We therefore suggest moving about as normal once home after the injections and avoid wearing splints if possible for the rest of the day.

Adverse events or side effects are rare and may include:

  • Generalised weakness
  • Flu like syndrome

Even if the above occur they are temporary and will not last long.

How to get the best results from the injection)s)

Please read the information leaflet.  Share the information it contains with your family and friends (if you wish), so that they can provide help and support.  There may be information they need to know, especially if they are taking care of your child following this examination.

The hospital physiotherapist will liaise with you and your child’s regular physiotherapist to develop a treatment plan to help you get the best results from the injections.

This may require:

  • a change to your child’s splints
  • the provision of some temporary splints
  • recommendation of a piece of equipment
  • attendance at an exercise group or once or twice weekly attendance at the hospital Physiotherapy Department for up to 6 weeks following the injections

It is important that you tell the physiotherapist if you do not think your child will be able to follow the treatment plan.  We will also liaise with school / nursery staff if children require changes to existent school management programmes.

School / Nursery

It is advisable that you inform the school / nursery, once your child is put on the waiting list for injections, that time off will be required for the injections and follow up appointments.  We do our best to offer appointments at convenient times and will try to avoid particularly difficult times such as exams, provided that you have informed us of these.

General Advice and Consent

Most of your questions should have been answered by this leaflet, but remember that this is only a starting point for discussion with the healthcare team.

Consent to treatment

Before any doctor, nurse or therapist examines or treats your child, they must seek your consent or permission. In order to make a decision, you need to have information from health professionals about the treatment or investigation which is being offered to your child. You should always ask them more questions if you do not understand or if you want more information.

The information you receive should be about your child’s condition, the alternatives available for your child, and whether it carries risks as well as the benefits. What is important is that your consent is genuine or valid. That means:

  • you must be able to give your consent
  • you must be given enough information to enable you to make a decision
  • you must be acting under your own free will and not under the strong influence of another person

Information about your child

We collect and use your child’s information to provide your child with care and treatment. As part of your child’s care, information about your child will be shared between members of a healthcare team, some of whom you may not meet. Your child’s information may also be used to help train staff, to check the quality of our care, to manage and plan the health service, and to help with research. Wherever possible we use anonymous data.

We may pass on relevant information to other health organisations that provide your child with care. All information is treated as strictly confidential and is not given to anyone who does not need it. If you have any concerns please ask your child’s doctor, or the person caring for your child.

Under the General Data Protection Regulation and the Data Protection Act 2018 we are responsible for maintaining the confidentiality of any information we hold about your child. For further information visit the following page: Confidential Information about You.

If you need information about your child’s (or a child you care for) health and wellbeing and their care and treatment in a different format, such as large print, braille or audio, due to disability, impairment or sensory loss, please advise a member of staff and this can be arranged.