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.
Diffuse Intrinsic Pontine Glioma also known as 'DIPG' is the second most common type of primary, high grade brain tumour in children. Primary brain tumours are those which originate in the brain rather than having spread there from another part of the body.
DIPG is a type of high grade brain tumour. High grade brain tumours tend to grow quickly and are more likely to spread to other parts of the brain or spinal cord. They are sometimes referred to as being 'malignant' or 'cancerous'.
DIPGs originate in an area of the brain, and more specifically the brainstem, called the pons. The pons is an area deep within the lower part of the brain which is responsible for a number of critical bodily functions, such as breathing, sleeping and blood pressure.
The cause of brain tumours, including DIPG, is not yet known. 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 that shows that anything you may have done during pregnancy or in your child's early infancy could have caused your child's brain tumour.
The signs of a DIPG vary as the pons and surrounding structures (where DIPGs are located) are responsible for a variety of different body functions. A child with a DIPG may display:
In a relatively small number of cases, growth of a DIPG might block the drainage of cerebrospinal fluid (the fluid which surrounds and nourishes the brain), causing a build up of pressure in the head. This is known as hydrocephalus which is very common in other types of brain tumours. Hydrocephalus can cause symptoms such as headache (especially in the morning), nausea and fatigue.
Not all cases of DIPG are identical and a child might show a combination of these symptoms.
If your child is diagnosed with a DIPG, having surgery to remove the tumour may not always be a viable option due to the dangers of operating on critical areas of the brain.
The standard of treatment for DIPGs is radiotherapy, which is usually administered over 3 to 6 weeks depending on the type of radiotherapy that is deemed best for your child (with a daily dose given Monday to Friday). Your child might also be given steroids during this period to help reduce some of the pressure caused by the tumour and radiation treatment.
Based on the findings of various studies, chemotherapy drugs currently used to treat adult high grade gliomas in other parts of the brain have been shown not to be effective in treating childhood DIPGs, so your child is unlikely to receive this type of treatment.
Given the relative lack of treatment options for DIPGs, you may want to consider looking for an available clinical trial your child could join. Even if your child is not given a new treatment whilst on a clinical trial, they will be given conventional (standard) treatment while also having their health monitored very closely.The Brain Tumour Charity is currently funding research into DIPGs, in order to discover what their biological characteristics are, how they develop and consequently, what type of drugs will be needed to treat them.
Prognosis in relation to brain tumours is an average number, given in months or years, that a patient is likely to survive for following diagnosis. While this number can give a general overview of prognosis for DIPGs, it is important to remember that each child's journey is unique and not necessarily represented by an average figure. This statistic does not take into account your child's individual circumstances such as their general health and the quality of care provided by their hospital or treatment centre.
If your child has been diagnosed with a DIPG, focusing on their treatment and wellbeing on a day-by-day basis is the most important thing.
If you would like to know what the average prognosis is for DIPGs, please visit our prognosis page.
Find out more about DIPG in our full fact sheet.
Find out more in the full fact sheet - Clear Print version, designed to RNIB guidelines
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:
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