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.
Around 598 children and young people aged 19 and under are diagnosed with a brain tumour each year in the UK. Read more about childhood brain tumour types, side-effects and the support we offer to children with a brain tumour and their families.
How will I know if my child has a brain tumour?
Symptoms of a brain tumour vary from child to child and can also depend on where they are located in the brain. Some of the brain tumour symptoms are similar to those of other common childhood illnesses. The presence of a symptom does not necessarily mean that your child has a brain tumour.
Common symptoms of childhood brain tumours include:
If your child has one or more of the above, you should take them to see a GP, explaining your worries. If they have two or more, ask for an urgent referral which means that your child will be given an appointment with a specialist who can further investigate the causes of the symptoms.
If you child's symptoms are limited to eye problems and/or headaches, your GP will often recommend an eye test. You can speed up the process, by taking your child to an opticians whilst waiting for the appointment to see the GP.
More information about the symptoms of a brain tumour in children can be seen on the Symptoms of brain tumours in children page.
If your GP or A& E doctor suspects a brain tumour, they will refer your child to a specialist, such as a neurologist or paediatrician. They will ask questions about your child's health and carry out a physical examination, as well as a number of other tests - such as a neurological test. This looks at their sight, hearing, alertness, muscle strength, co-ordination and reflexes. Your child will also need an MRI (Magnetic Resonance Imaging) or CT (Computerised Tomography) scan to confirm whether a brain tumour is present.
Following a scan, if a brain tumour is found, your child may be referred to a neurosurgeon. A biopsy may be taken from your child's tumour. This involves an operation to take a sample of tumour cells. Alternatively, if possible, as much of the tumour as possible will be surgically removed. In both of these cases, cells from the tumour will be analysed in a laboratory, so that a detailed diagnosis of the exact tumour type and grade can be given. This is used to plan the best course of treatment for your child.
Opticians can also help diagnose brain tumours. If a tumour is causing increased pressure in the skull, this can sometimes be seen at the back of the eye during an eye test. If an optician sees this, they will refer your child to a specialist eye doctor called an ophthalmologist. They may refer onto the other specialists, or directly for a scan.
There are many different types of brain tumour. The most common types in children are:
Around half of all childhood brain tumours are a type of 'glioma'. This means they are derived from the various glial cells. Astrocytes, oligodendrocytes, and ependymal cells are all types of glial cells.
Of all gliomas, the largest subgroup is astrocytoma (arising from astrocytes) and these make up over two-fifths (43%) of all brain and spinal tumours in children.
In children, most astrocytomas tend to be slow growing (73% are low grade) and are diagnosed throughout childhood with no strong pattern by either sex or age. Pilocytic astrocytoma is one such tumour that is common in children.
Approximately 10-15% of childhood brain tumours in the UK are a type of high-grade astrocytoma called a Diffuse Intrinsic Pontine Glioma (DIPG). DIPG is a fast growing, type of brain tumour that originates in the brain stem. They often appear in children aged around six years old. Recently it has been renamed as a 'diffuse midline glioma', but you may still hear it being called by its old name..
Ependymomas account for about 10% of childhood brain tumours – they are the third most common type of brain tumour in children.
Read more about ependymomas.
About 20-25% of childhood brain tumours are embryonal tumours. These were previously called primitive neuroectodermal tumours (PNETs). They are usually high grade tumours and occur most frequently in younger children - with more than half of all embryonal tumours being diagnosed in children less than 10 years old.
Read more about Embryonal tumours.
These are the most common type of high-grade tumour in children. They make up around 20% of all childhood brain tumours. They are more common in boys than girls and are most commonly diagnosed at around the age of 5 years.
These account for 8% of childhood brain tumours. They are low grade and do not usually spread, but are near important structures in the brain and can cause problems as they grow. They can cause changes in hormone levels and problems with eyesight. Children with craniopharyngioma can experience weight gain and growth problems.
Read more about craniopharyngiomas.
For further information on more types of childhood brain tumours, please see our fact sheet at the bottom of this page or visit our child brain tumour types page.
Very often, the answer is that we just do not know. This can be one of the most difficult things to accept as a parent, as it can leave you feeling helpless. Brain tumours are nobody's fault. There is no research to show that anything you may have done during pregnancy, or in your child's early infancy, could have caused their brain tumour.
Learn more about how brain tumours form on our What is a brain tumour? page.
Treatments for childhood brain tumours may include surgery, radiotherapy, chemotherapy or proton beam therapy. Several factors influence which treatment will best help your child. A team of specialised professionals, called the MDT (Multi-Disciplinary Team) will consider your child's individual diagnosis and take account of factors, such as the size and location of the tumour, the type of tumour your child has and how quickly it is growing. They will also consider your child's age and their general health.
Read more about childhood brain tumour treatments.
Long-term effects from a childhood brain tumour vary from child to child and depend on the exact location of the tumour within their brain, the therapy given and the age at which it is given. Your child's consultant will be able to talk you through possible long-term effects they might experience. Some children with a brain tumour grow up to have little or no long-term effects, while others may experience some of the following:
Coping with a diagnosis of a childhood brain tumour can have a huge impact on you, as parents/carers, and on the rest of your family.
The Brain Tumour Charity's Children and Families Service can give help to you or your child if you need it. We have dedicated Children and Families Workers who can offer both practical and emotional support to parents, children and siblings, and a dedicated Young Adults Worker, who works with people from 16 - 30 years.
If you have any questions, or would like to talk to a member of the Information and Support team, please phone 0808 800 0004 or email email@example.com.
If you have further questions, need to clarify any of the information on this page, or want to find out more about research and clinical trials, please contact our team:
0808 800 0004 (free from landlines and mobiles)
Phone lines open Mon-Fri, 09:00-17:00
You can also join our active online community - Join our online support groups.