Diffuse intrinsic pontine glioma (DIPG)

Diffuse Intrinsic Pontine Glioma or ‘DIPG’ has recently been renamed ‘Diffuse Midline Glioma’ and 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.

What is a DIPG?

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.

What are the signs and symptoms of DIPGs?

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:

Abnormal alignment of the eyes or/and double vision (diplopia).

Weakness of facial muscles or facial asymmetry (one side of the face appearing different from the other).

  • Arm and leg weakness.
  • Unstable balance and co-ordination.
  • Difficulties walking and speaking.

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.

Questions you may want to ask your child’s doctor:

  • What treatment options are available for my child?
  • What might be the short and long term complications of treatment?
  • What services may be available to help my child and family cope?
  • When should I contact my child’s medical team?
  • How can I contact my child’s medical team?
  • Are there any clinical trials my child could take part in?