The Brainy Bag is available to all children diagnosed with a brain tumour.
Each bag is slightly different as it includes items appropriate to the age of the child.
Steroids reduce inflammation and swelling, and ease associated symptoms. They are also used to protect the brain during surgery. They help to manage the symptoms of a brain tumour rather than treating the tumour itself.
It is highly likely that your child will be given steroids at some point during their treatment.
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.)
There are different ways that steroids can be taken, including:
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.
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.
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.
Steroids affect different people in different ways, their effect will also depend on the type and dose prescribed to your child. Find out about the side-effects of steroids.
Although your child’s treatment plan will be carefully developed by healthcare professionals to be as effective as possible while having the fewest risks or side-effects, sometimes steroids might not work. This can be worrying, but just because one treatment hasn’t worked, it doesn’t mean others won’t.
Find out more about what happens when treatment doesn’t work.
Find out more about Steroids for children on the full fact sheet - including more information about coping with the side-effects.
Find out more about Steroids for children on the full fact sheet - Clear print version,designed to RNIB guidelines - including more information about coping with the side-effects.
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