Spasticity in under 19s: management

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.

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.

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.

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.