Botulinum Toxin Treatment

What is Botulinum toxin?

Botulinum toxin is a medicine used to help relax stiff muscles.

Why do I need Botulinum toxin?

Stiff muscles can make it difficult for you to move your arms or legs. They can also be painful sometimes.

If you have difficulty moving your arms or legs it can often make joining in with activities more difficult. It can also make you trip over more often or make your splints or shoes uncomfortable.

The medicine helps relax stiff muscles making it easier for your arms or legs to move and making it easier for you to play and join in with your friends.

What happens when I come to hospital?

You will come to the children’s outpatient department with your family. There you will wait in the waiting area where we have lots of toys to play with until it is time for your appointment.

When you are called in, you and your family will go to one of the clinic rooms and meet the team. Sometimes there are student doctors or therapists in the room too, but if you don’t want them there you can ask your family members to tell the doctor and that is fine.

You will be asked lots of questions about how you are doing with your moving around at home or school and what sort of things you find hard to do such as running or writing.

After all the questions the physiotherapist may want to see you walk. If you normally wear splints or use a special walker they will let you use them in clinic (so don’t forget to bring them with you). As they will want to see your legs, please bring some shorts with you.

After walking up and down a few times the physiotherapist will want to do some stretches on your legs which are usually the same as the ones you do with your own physiotherapist or at school.

If you have difficulty moving your arms and hands then the team will want to stretch your arm and hand muscles. They will also want to see you using your hands by playing some fun games.

All these things help the team decide if any of your muscles are stiff. If the team think that your stiff muscles are making things difficult for you they will talk to you and your family about Botulinum toxin medicine and how it may help you.

How do I have Botulinum Toxin Medicine?

If you and your family decide to have some treatment you will be given an appointment to come back to hospital.

When you return for treatment, one of the team will put some numbing cream on the places where the medicine will go. The cream takes one hour to work. If you don’t want numbing cream, we can use cold spray to numb the area instead. You don’t have to wait for this to work.

The nurse may teach you how to breathe in some special medicine through a mask that goes over your mouth just like a spaceman. This special medicine makes you feel relaxed and sometimes a little dizzy and giggly. If you can’t use the space mask, the nurse will give you some medicine to swallow that makes you feel relaxed and a little bit sleepy.

Whilst the cream is working you can go and play in the waiting room.

Once the cream has made your skin numb the nurse will take you to one of the clinic rooms and ask you to start breathing in the medicine through the space mask if you can. The medicine can then be given to your stiff muscles using a very small, thin needle.

Sometimes we use a special machine called an ultrasound machine. This shows them a picture of your muscles to help see where the medicine is going. If we are using this machine we will let you have a look at the pictures if you want.

Does it hurt?

The cream /cold spray and either the medicine you breathe in through the mask or the medicine you swallow should make the injections as painless as possible. Sometimes you can feel a little scratch but it only lasts a second.

Nearly all the children we ask after the injections say that it isn’t as bad as they thought it was going to be.

When can I go home?

If you have been using the mask and medicine you breathe in, you can usually go home about 10 minutes after the injection.

If you have the medicine you swallow, you have to wait in one of the clinic rooms with your family until you have properly woken up. This can sometimes take about one hour. The nurse will keep coming in and checking on you and will tell you when you can go home.

When will I come back to hospital?

If this is the first time you have had botulinum toxin medicine the physiotherapist will arrange a telephone consultation with you after the injections to see if it has helped you at all. You may also come back to the occupational therapy splint clinic.

The rest of the team will want to see you again in six months time to see if you need any more medicine.

If you have any questions before or after coming to the hospital please phone the clinic sisters between 9am – 5pm Monday – Friday.

The Botulinum team

Katie Davis – Clinical Specialist

Catherine Wilsmore – Physiotherapist

Dr Karen Pysden – Consultant Paediatric Neurologist

Diane Doherty-Williams – Clinic Sister

Heather Tomkinson – Clinic Sister

Laura Brightbart – Clinic Sister

Kate McCune – Physiotherapist