Join our community on Facebook
Our closed Facebook group for parents is a great place to connect with other parents affected by a brain tumour and share your experiences.Join today
Previously called DIPGs, diffuse midline gliomas are the second most common type of primary high grade brain tumour in children.
If your child or a child you know has recently been diagnosed with a diffuse midline glioma, you may be worried about what this means. This is a natural way to feel. Our Support and Information team can help answer any questions you may have or provide a listening ear if you need one.
Diffuse midline gliomas are grade 4 brain tumours that, until recently, were called diffuse intrinsic pontine gliomas (DIPGs). They're more common in children, but they can occur in adults.
Diffuse midline gliomas (previously called DIPGs) are:
Diffuse midline gliomas (previously called DIPGs) grow in the areas of the brain that are found in the midline, this is the natural centre line of the brain between its two halves. They most commonly grow in the pons in region of the brain stem, the thalamus and the spinal cord.
If your child is diagnosed with a diffuse midline glioma, it can be overwhelming. Use BRIAN’s quality-of-life tracker to monitor how they feel and the symptoms they have. Then share this with their healthcare team to show what they most need support with.
BRIAN is our trusted online app where you can track your experience, compare it with others who’ve been there and get the knowledge you need to make informed decisions.
The symptoms of a diffuse midline glioma (previously called DIPG) can vary, as the areas where they usually develop are responsible for a range of different body functions.
The most common symptoms your child may experience include:
Growth of a diffuse midline glioma might also block the drainage of the cerebrospinal fluid that surrounds and nourishes the brain. This can cause a build-up of pressure in the head, known as hydrocephalus, and can cause:
Radiotherapy is the current standard of treatment for children with a diffuse midline glioma (previously known as DIPG). Steroids may also be used to help reduce some of the pressure caused by the tumour and radiation treatment.
Unfortunately, surgery to remove the tumour is usually not possible because of:
Chemotherapy drugs that are used to treat high grade gliomas in other parts of the brain and in adults, have unfortunately not been effective in treating childhood diffuse midline gliomas.
The cause of brain tumours, including diffuse midline gliomas, 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 though. 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.
At the moment, there’s ongoing research into diffuse midline gliomas, including discovering its causes, which could help develop new treatments in the future.
This will be different for everybody who is diagnosed with a diffuse midline glioma (formerly called a DIPG). It depends on many factors, including the specific details about the tumour, how they react to treatment and their general health.
If you need someone to talk to or advice on where to get help, our Support and Information team is available by phone, email or live-chat.
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 on Facebook - find out more about our groups.