Kids Health Info

Intrathecal baclofen 4 Complications

  • There are some important things to be aware of if your child has a baclofen pump. Complications are rare but it is important to know the possible side effects and what to do if something goes wrong. If you are concerned about your child, you can contact the baclofen team at the RCH on (03) 9345 5522 at any time. A baclofen doctor is on call 24 hours a day, seven days a week. Ask for the on-call developmental medicine consultant or the on-call rehabilitation consultant, depending on which is your child's primary baclofen team.

    Possible complications of ITB therapy include:

    • overdose of baclofen
    • underdose of baclofen
    • infection of pump or catheter
    • infection of wound
    • catheter kink (i.e. bent tubing) -  preventing the flow of baclofen
    • catheter break - causing a leak of baclofen
    • catheter disconnection from pump - preventing baclofen from reaching spinal cord
    • pump malfunction (i.e. pump not working properly).

    When to call your child's baclofen doctor:

    • if your child has a temperature higher than 38ºC
    • you  notice redness or inflammation around the scar
    • you notice swelling around the pump area
    • if your child is drowsy or you can't wake them
    • if you think your child is too 'floppy'
    • if your child is unusually sweaty, itchy or grumpy
    • if you are concerned about the pump
    • if you hear beeping from the pump
    • if you think your child is receiving too much or not enough baclofen (see side effects below).

    A baclofen doctor is on-call 24 hours a day, seven days a week. You can contact them by calling the RCH switchboard on (03) 9345 5522 and asking for the on-call developmental medicine consultant or the on-call rehabilitation consultant, depending on which is your child's primary baclofen team.

    Side effects of baclofen

    Baclofen can have side effects. These include:

    • constipation (can't do poo easily and poos are hard)
    • nausea (feels sick in the tummy or feels like vomiting)
    • blurred vision.

    Not enough baclofen

    It is important to know that after a few months your child's body will become dependent on the baclofen. If for any reason they suddenly stop getting baclofen, it can make them very sick. This can happen because of a problem with the pump, a crack or break in the tubing or movement of the tubing.

    Signs that your child may not be receiving baclofen:

    • your child's muscles are tighter than usual
    • they have a high temperature
    • their skin gets itchy
    • they are grumpy or irritable.

    Too much baclofen

    It is also important to know that sometimes children get too much baclofen. This may happen when:

    • a catheter is kinked and then becomes unkinked
    • from human error when programming the pump
    • because your child is sensitive to an increase in their dose of baclofen. 

    It is important to know the signs and symptoms of too much baclofen.

    Signs that your child might be getting too much baclofen:

    • slow breathing
    • drowsiness
    • you can't wake them.

    What to do

    If you think your child is not getting enough baclofen, or if you think they are getting too much you MUST take them to the emergency department at RCH and contact the baclofen team - call (03) 9345 5522 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.  

    Remember, you can call 000 for an ambulance at any time if you are worried.

    Pump is beeping

    The pump is designed to beep if the amount of medicine in it gets too low, or if the battery is running out. 

    The battery life of a pump is about five to seven years. Near the end of that time your child will have another operation to put in a new pump. If the battery starts to run out before the pump is replaced the pump will beep.

    In unusual circumstances, if your child's pump is not refilled when it is due, the pump will beep two days before the medicine is due to run out.  

    What to do

    If you ever hear beeping from your child's pump, even if you think it is not due for a refill you MUST contact the baclofen doctor and take your child to the RCH Emergency Department.

    Important considerations

    • Holidays
      When planning a holiday, you must always consider how you will get help if you have concerns about your child's pump. Will you have access to medical help that has knowledge of the pump? If not, who will you contact and where is the nearest hospital?  What is the emergency number (if travelling to another country)? Talk with the baclofen nurse if you are planning a holiday.

    • Tell doctors that your child has a baclofen pump
      Every time your child is in any hospital for any reason you MUST tell the doctors that your child has an intrathecal baclofen pump. Tell them they must tell the RCH baclofen team that your child is in hospital by calling (03) 9345 5522 and asking for the on-call developmental medicine consultant.

    • Tell all medical staff that your child has a baclofen pump
      It is a good habit to tell every medical person (doctors, nurses, radiologists, pharmacists and other allied health professionals) caring for your child that they have a baclofen pump.

    Key points to remember

    • Complications from a ITB pump are rare, but you must always be alert and contact your baclofen doctor if you are concerned.
    • If you hear beeping from the pump, contact your child's baclofen doctor urgently or bring your child to the RCH Emergency Department.
    • You can always call an ambulance by dialling 000 if you are worried about your child, even if you are unsure.

    Contact information

    • RCH baclofen doctor 24 hours a day, seven days a week T: (03) 9345 5522 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.
    • Ambulance and Emergency Services T: 000
    • If you have a question that is not urgent you can call your baclofen nurse by contacting Developmental Medicine T: (03) 93455898

    More information

    This fact sheet has been developed by the RCH 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


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.