Information for the public

Treatment with drugs

Some treatments may not be suitable for your child, depending on their exact circumstances. If you have questions about specific treatments and options covered in this information, please talk to a member of your child's healthcare team.

Oral drugs

Diazepam and baclofen

If your child has spasticity and it's causing them discomfort, pain or muscle spasms, or it's stopping them from doing normal everyday tasks, there are drugs that may help them. If they need help with pain in the short term, the healthcare professionals looking after your child may recommend a drug to take by mouth (known as an oral drug) called diazepam. If they need help over a longer time, they may be recommended baclofen.

If your child is being treated with diazepam, the drug should normally be taken at bedtime. If it doesn't seem to be working, the healthcare team may try increasing the dose or adding a dose to take during the day. Treatment with baclofen starts off with a low dose which is then gradually increased over around 4 weeks to produce the best effect.

If the treatment with diazepam and baclofen isn't helping when these drugs are used on their own for 4 to 6 weeks, your child's healthcare team may suggest trying both drugs at the same time.

Your child's healthcare team should check at least every 6 months to make sure the treatment is still working, and whether your child is having any problems with it. If the drugs make your child drowsy or cause other problems, the healthcare team may suggest reducing the dose, or stopping the treatment altogether. If, for some reason, a decision is made to stop the treatment, and your child has been taking the drugs for several weeks or longer, it will be important to reduce the dose gradually to help their body adjust.

Dystonia is involuntary muscle contraction that causes certain parts of the body to go into abnormal or painful positions. If your child has dystonia that is causing a lot of problems with posture, pain and everyday activities, their healthcare team may recommend trying various oral drugs.

Botulinum toxin type A

Botulinum toxin is a drug that is injected into muscles to relieve spasticity. Your child's healthcare team might consider botulinum toxin injections for your child if their spasticity is causing them difficulty with looking after themselves, or restricting their ability to move normally or to use an orthosis. Botulinum toxin might also be recommended if your child's spasticity is causing pain, disturbing their sleep or causing them concern about their appearance by its effect on the posture of the arms, hands or feet.

Treatment with botulinum toxin

To make sure that botulinum toxin is suitable, your child will have an assessment to test their muscle tone, range of movement and ability to carry out voluntary movements. This will also provide information to help measure their response to treatment.

When considering whether or not your child should have botulinum toxin, you should be given information about what the treatment involves, the possible benefits of the treatment and how likely it is that the treatment goals will be reached. Your child may need to wear a cast or orthosis after the treatment – for example, to stretch the muscles. They will also need a special programme of physical therapy.

Before starting the treatment, your child's healthcare team should tell you that in very rare cases botulinum toxin can cause swallowing and breathing difficulties. They will explain how to recognise that this may be happening and that you should return to the hospital immediately if these complications occur.

During the treatment, your child may be able to have a painkiller, anaesthetic or sedative to make the injection less uncomfortable and to help with accuracy of injection.

Your child's healthcare team should check after 6 to 12 weeks that the botulinum toxin is working, and then again after 3 to 6 months to check whether more injections are needed.

Intrathecal baclofen pump

If, despite other treatments, your child has persistent pain or muscle spasms, or problems with posture, everyday activities or personal care, the healthcare professionals looking after your child may recommend treatment with a baclofen pump (also known as intrathecal baclofen). This involves implanting a small pump in the tissues under the skin close to the waist. The pump then slowly injects baclofen through a tube into the fluid surrounding the spinal cord. Because the baclofen is given directly into the spinal fluid in a low dose, it has fewer side effects than oral baclofen and is much more effective at reducing spasticity and the problems it causes.

Your child's healthcare team will look at the benefits and risks of having a pump and discuss these with you. They should also give you information about the treatment (see box below).

There might be reasons why your child can't have this treatment. For example, they might be too small for a pump, or they might have a condition that would make it unsafe for them (for example, a serious infection).

Baclofen testing

Before your child can have the baclofen pump, they should be assessed and then offered a test to check the effects of the baclofen on their spasticity. This involves giving your child a general anaesthetic, and then injecting a small amount of baclofen into the fluid around the spinal cord.

Around 3 to 5 hours after the injection (or later if the anaesthetic hasn't worn off), your child should be checked to see how well the baclofen has worked. The healthcare team will also discuss the response to the treatment with you.

Information about using a baclofen pump


Before your child has the baclofen test, you should be given verbal and written (or appropriate formats) information about:

  • what the test will involve and possible side effects

  • how the test might show whether treatment with baclofen is likely to work and whether it is likely to cause problems.


Before your child has the treatment, you should be given verbal and written (or appropriate formats) information about:

  • how the pump is implanted

  • risks and problems related to the pump or treatment, or both

  • looking after the pump and using it safely

  • the fact that it is dangerous to stop the baclofen pump suddenly

  • the need for regular hospital appointments after the pump has been implanted (for example, to refill or reprogram the pump).

Treatment with the baclofen pump

If your child's spasticity responds well to baclofen testing, your child should be offered pump implantation within 3 months of having the test. Your child should be able to have regular appointments with the healthcare team for pump refills, and so that they can check how well the treatment is working and if there are any unwanted effects. They may increase the dose to make the baclofen more effective by reprogramming the pump.

If the treatment isn't working and this is not caused by problems with the equipment, the healthcare team may discuss removing the pump and discuss other treatment options with you – for example, surgery.

A baclofen pump usually continues to work for several years. After this, you will need to decide with the healthcare professionals looking after your child whether it should be replaced. To help with this, the dose of baclofen may be reduced gradually to check whether the treatment is still helping.

Questions you might like to ask about treatment with the baclofen pump

  • Please tell me why you have decided to offer my child this particular type of treatment.

  • How long will my child need to use the pump for?

  • Are there any side effects?

  • Will my child be able to do normal everyday activities?

  • Please tell me what the treatment will involve.

  • How long will it take to have an effect?

  • How does the pump work?

  • Are there any risks associated with this treatment?

  • Are there treatment options other than a baclofen pump?

  • Is there some written material (like a leaflet) about the treatment that I can have?

  • Information Standard