Kids Health Info

Intrathecal baclofen 1 Introduction

  • How you say it: Intrathecal In-tra-thee-call / baclofen  back-low-fen

    Intrathecal baclofen is a treatment used for children who have conditions that cause spasticity and dystonia. For example, children with cerebral palsyacquired brain injuries and some metabolic or neurodegenerative disorders can all suffer from spasticity or dystonia.  

    Spasticity and dystonia is when muscles are tighter than they should be. Baclofen is a medicine that tells the muscles to relax. Intrathecal baclofen is baclofen that is given into the space around the spinal cord. This is done via a pump that is permanently implanted inside your child's abdomen (tummy), during an operation. The pump has a tube that goes to the spinal cord. Please see the Kids Health Info fact sheet: Intrathecal baclofen 3 the ITB pump. 

    What is intrathecal baclofen therapy used for?

    Children with dystonia or spasticity have muscle tightness. This muscle tightness can stop them from doing everyday tasks such as holding a cup, walking and sometimes even talking. Muscle tightness can cause pain in some children. In others it can make getting dressed very hard as their limbs won't bend to put on clothing. For some of these children, intrathecal baclofen relaxes their muscles and makes it easier for them to move those muscles to do more things, or simply to relieve some of the pain that the muscle tightness causes.

    Who gets intrathecal baclofen therapy?

    Before your child's doctors decide if intrathecal baclofen is right, many specialists will meet you and your child and perform thorough assessments. Your child may be seen by an orthopaedic surgeon, a neurosurgeon, a paediatrician who specialises in disability, a paediatrician who specialises in rehabilitation, an occupational therapist, a physiotherapist and/or a nurse consultant/coordinator. 

    There are many factors to consider when deciding who should have intrathecal baclofen treatment. Intrathecal baclofen does not suit every child or every family. Being part of the intrathecal baclofen program puts limitations on certain parts of your child's life. You have to live close to a medical centre that can manage the baclofen therapy and you have to be able to attend many appointments. All the people who help care for your child need to be willing to learn about baclofen and its side effects. 

    My child has been recommended for intrathecal baclofen therapy. What happens next?

    Once your child's doctors and you have decided that intrathecal baclofen therapy might be right for your child, you will be booked in for a trial of the therapy. There are two types of trial: 

    1. a bolus trial
    2. a catheter trial. 

    See the Kids Health Info fact sheet: Intrathecal baclofen 2 Trial dose for more information.

    It will depend on your child's condition as to which trial they will go on. If your child has a positive response to the trial (i.e. it works), an appointment will be booked with a neurosurgeon. Your child will also be assessed by a physiotherapist and an occupational therapist to get an idea of your child's present condition to use for comparison later.

    What happens after a successful trial?

    If your child's trial was successful, an appointment will be made with a neurosurgeon who will discuss the operation to insert the pump, how the pump works and when your child might receive a pump. Many factors influence when your child might have a permanent pump implanted and the doctors will talk to you about this.

    Key points to remember

    • Intrathecal baclofen works differently for every child. Your doctors cannot predict exactly how your child might respond to the therapy.
    • Baclofen can greatly improve a child's quality of life, but it can place restrictions on their life as well.
    • Intrathecal baclofen therapy is not suitable for every child with cerebral palsy.
    • Your child needs a thorough assessment by clinicians who can help you decide if baclofen is suitable for your child and family.
    • Every child who is considered suitable for a baclofen pump needs to have a trial of baclofen first.

    More information

    Contact

    The Royal Children's Hospital
    T: (03) 9345 5522
    A Baclofen doctor is on call 24 hours a day, seven days a week. Call the main hospital number and ask for the on-call developmental medicine consultant OR the on-call rehabilitation consultant, depending on which is your child's primary baclofen team.

     

    Developed by the Royal Children's Hospital Department of Developmental Medicine in consultation with the Departments of Neurosurgery, Paediatric Rehabilitation, Orthopaedics and Physiotherapy. Many thanks to the parents who were involved in the development and review of this fact sheet. First published in July 2007. Updated November 2010



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Disclaimer
This information is intended to support, not replace, discussion with your doctor or healthcare professionals. The authors of these consumer health information handouts have made a considerable effort to ensure the information is accurate, up to date and easy to understand. The Royal Children's Hospital, Melbourne accepts no responsibility for any inaccuracies, information perceived as misleading, or the success of any treatment regimen detailed in these handouts. Information contained in the handouts is updated regularly and therefore you should always check you are referring to the most recent version of the handout. The onus is on you, the user, to ensure that you have downloaded the most up-to-date version of a consumer health information handout.