The signs and symptoms of DIPG vary from patient to patient. The tumour can grow very fast so symptoms often appear suddenly and get worse quickly. A child with DIPG may display some of the following;

  • Problems with eye movement. The most common one is difficulty looking to the side. Other problems of eye movement include drooping eyelids and an inability to close the eye(s) completely. Abnormal alignment of the eyes and/or double vision can also be present.
  • Weakness of facial muscles or facial asymmetry (one side of the face appearing different from the other). Drooping on one side of the face.
  • Arm and leg weakness.
  • Unstable balance and poor co-ordination.
  • Difficulties walking and speaking.
  • Sudden appearance of hearing problems, including deafness.
  • Trouble chewing or swallowing, gagging while eating.
  • Headaches , nausea and fatigue. In a small number of cases , growth of a DIPG can cause hydrocephalus (roughly 10% have it at the time of diagnosis). The tumour blocks the drainage of cerebrospinal fluid (the fluid which surrounds and nourishes the brain), causing a build up of pressure in the head. Hydrocephalus is very common in other types of brain tumours and can cause symptoms such as headaches (especially in the morning), nausea/vomiting and fatigue.

Most of the above are common enough symptoms / complaints and in most children are not linked to DIPG / a brain tumour. If you are seeing a few of the above symptoms in your child, a visit to your local GP to rule out something more serious is always a good idea. One GP told us our son ‘probably had a virus’. You will know your child best though so if you are in doubt, please don’t be afraid to ask for a second opinion.