Steroids for children

Steroids occur naturally within our bodies, but can also be made in the laboratory for medical purposes. One of their key functions is to reduce inflammation/swelling and ease associated symptoms, such as headaches. They are also used to protect the brain during surgery. In other words, steroids help to manage the symptoms of a brain tumour rather than treating the tumour itself.

When and why might my child be given steroids?

It is highly likely that your child will be given steroids at some point during their treatment.

After diagnosis

When your child has a tumour in their brain, it is not only the tumour itself that causes some of the symptoms they may have, but also the swelling surrounding the tumour. This swelling puts pressure on surrounding tissues that can cause symptoms such as headaches, sickness and seizures (fits). To help reduce the swelling, your child's doctor may prescribe steroids (often a steroid called Dexamethasone). As steroids are fast-acting drugs this could mean that some of the effects caused by the tumour reduce quite quickly. This does not mean, however, that the size of tumour itself has been reduced.

Before or after treatment

If your child is having radiotherapy or surgery as part of their treatment, they may be given steroids afterwards to help bring down swelling caused by these treatments.

If your child is having chemotherapy, a small amount of steroids may be given if they feel sick (have nausea). However, sometimes the steroid usually given in this instance (Dexamethasone) may not be able to be used, as it can reduce the amount of the chemotherapy drug that gets into the brain.

Your child's medical team will advise whether it can be given or not, if your child is very nauseated.

(Steroids are also given to help manage symptoms if a tumour has come back after treatment or when a tumour is found to have already spread at first diagnosis.)

How will my child take steroids?

There are different ways that steroids can be taken, including:

  • orally (as tablets or liquid medicine)
  • by injection (to the vein or muscle)

The most common way for children to take steroids is in tablet form. The tablets are small and should not be too difficult for your child to swallow.

If your child does have difficulty swallowing the tablets, speak to your child's health team, who may be able to suggest some ways of helping them to overcome this difficulty. For example, getting your child to swallow tic tacs as practice for taking tablets. They may also refer your child to a Speech and Language Therapist (SLT), who can help with swallowing difficulties.

How long will my child need to take steroids for?

Generally, your child will only take steroids for a short while (a few days or weeks), but there are some cases when they'll need to take them for longer. Your child may need to take their steroids every day, or for a few days at a time.

Occasionally the body is unable to produce its own steroids, due to the effect of the tumour, surgery or radiotherapy. In this case, your child will need to have lifelong replacement of steroids in the way that the body produces them.

This is called 'physiological replacement', rather than the 'pharmacological treatment' that is used to control symptoms at diagnosis. In this case, the drug usually used is hydrocortisone.

You will be given instructions from your child's doctor about exactly when and for how long your child will need to take steroids.

After taking steroids for a few days, your child's body will start to produce less of its own steroids naturally.

When taking your child off steroids, their doctor is likely to reduce their dosage gradually. This gives your child's body time to start making steroids naturally again so they have the correct levels when their medication is final stopped.

Stopping steroids suddenly can make your child unwell, so it is important to follow the doctor's advice.

If your child is given a steroid card by their doctor, make sure they carry it with them at all times. A steroid card contains details of their steroid type and dosage, which is important information if they need medical treatment in an emergency. The doctor may also advise you that your child needs to carry this card for up to a year following completion of their steroid treatment.

What if I forget to give my child their steroids?

You should, of course, make every effort to help your child remember to take their steroids when they are required to, but with everything going on, it is possible that you may forget.

It can help to set an alarm to remind you (and others who are likely to be with your child), or leave yourself a note.

Getting into a routine of when your child takes their steroids is also helpful.

If your child does miss a dose, DON'T GIVE THEM A DOUBLE DOSE NEXT TIME. Speak to your child's doctor to see what they advise. This is a good question to ask when your child is first put on steroids, so that you are prepared in case this happens.

Important points to remember:

  • Steroids help with symptom management rather than treating the tumour itself
  • It is important that your child keeps taking steroids for as long as their doctor tells them to. When taking steroids your child's body will start to produce less of its own steroids naturally, so stopping steroids suddenly can make your child unwell.
  • Your child must always carry their steroid card with them - for up to a year after treatment.
  • The steroids used for brain tumours are NOT the anabolic steroids that are used by some athletes to build muscle

What are the side-effects of steroids?

Everybody is different and your child is unlikely to have all these side-effects. You should talk to your child's doctor about any side-effects they do experience.

There is also more information about how to cope with these in the full fact sheet at the bottom of this page.

Remember do NOT stop giving your child their steroids without advice from your doctor.

Common side-effects of steroids include:

Common side-effects of steroids include:

  • feeling hungrier than usual - if not managed, this can lead to weight gain
  • difficulty sleeping
  • indigestion or heartburn
  • infection in the mouth - known as oral thrush
  • feeling thirstier or needing to wee more often
    (Speak to your child's doctor promptly, as your child's blood sugar levels may have temporarily heightened)
  • swelling of the hands and feet - because their body is retaining fluid
  • emotional effects - such as anxiety, irritability, temper tantrums, crying

With longer term use of steroids (more than a few months), other side-effects include:

  • skin feeling thinner
  • bruising more easily
  • legs feeling weaker
  • increased chance of catching infections and infections being more severe
    (as your child's immune system may be lower)
  • increased pressure in the eyes, which can lead to gradual loss of vision
    (take your child to the opticians regularly to be monitored for any signs)
  • their growth may be affected, if taking a high dose of steroids for a long time

Children on steroids should not be given 'live' vaccines including the MMR (measles, mumps and rubella) injection nor the BCG injection (which protects against tuberculosis). Speak to your child's doctor about this.

Coping with emotional and behavioural effects

The emotional and behavioural side-effects that steroids may cause can be difficult to cope with, but it is important that your child takes them to reduce swelling and relieve pressure on their brain. You may find the following practical suggestions helpful:

  • allow your child to burn off excess energy
  • keep a diary of your child's mood swings - to see if there is a pattern, which can help with planning activities
  • talk to your child about the effect of steroids on their mood - it can help them understand and manage their mood swings
  • be aware of potential effects of mood swings on brothers and sisters
  • discuss difficulties with your child's health team - they may have useful suggestions

Page last reviewed: 02/2018
Next review due: 02/2021

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