High-grade glioma in children — coordinated care that puts your child first

A high-grade glioma is a fast-growing brain tumour that arises from glial cells — the supporting cells of the brain and spinal cord. In children, the two most common forms are diffuse intrinsic pontine glioma (DIPG), which grows within the brainstem, and high-grade gliomas in other parts of the brain such as the cerebral hemispheres or thalamus. The word “high-grade” refers to how the tumour looks under a microscope: the cells are abnormal and divide rapidly. These tumours are among the most challenging paediatric brain cancers, which is why care must be coordinated by a team that includes paediatric oncology, neurosurgery, radiation oncology, and specialist nursing. CION reviews every case at a multidisciplinary tumor board before any treatment decision is made.

The warning signs of a brain tumour in a child depend on where in the brain the tumour is located. Common signs include persistent or worsening headaches — particularly morning headaches that improve after vomiting — nausea and vomiting that cannot be explained by illness, balance problems or difficulty walking, changes in vision such as double vision or blurring, facial weakness or asymmetry, and a change in the child’s personality, mood, or school performance. In DIPG specifically, the early signs often include double vision, difficulty swallowing, facial weakness on one side, and unsteady walking that develops over several weeks. These symptoms overlap with many common childhood conditions, so a persistent pattern or combination of symptoms — especially over two or more weeks — warrants an urgent evaluation by a doctor. Do not wait.

Diagnosis typically begins with an MRI of the brain and spine. High-grade gliomas have a characteristic appearance on MRI that helps the neuroradiologist and neurosurgeon identify them. In most locations of the brain, a surgical biopsy is then performed to obtain a tissue sample. The tissue is sent for pathology — including molecular testing — which helps classify the tumour precisely and guides treatment decisions. For DIPG (diffuse intrinsic pontine glioma), the location deep in the brainstem makes a biopsy highly complex, and many teams around the world have moved toward biopsy only in specific circumstances. Molecular profiling — particularly testing for a mutation called H3 K27M — is now considered a key diagnostic step for midline gliomas. The CION team will explain what tests your child needs based on the specific findings.

Treatment for high-grade glioma in children is coordinated by a multidisciplinary team. For most high-grade gliomas outside the brainstem, the approach begins with surgery to remove as much of the tumour as safely possible, followed by radiation therapy and chemotherapy. The specific combination depends on the tumour’s location, grade, and molecular profile. For DIPG, radiation therapy to the brainstem is currently the standard treatment because surgery is not possible in that location; it can provide temporary improvement in symptoms and a period of disease control. Clinical trials exploring targeted treatments and immunotherapy approaches are an active area of research for these tumours. The CION team will discuss all options available for your child at the time of consultation, including whether any clinical trials are open and relevant.

Multidisciplinary care means that doctors from several specialties — paediatric oncology, neurosurgery, radiation oncology, neuroradiology, pathology, and palliative/supportive care — review the child’s case together and agree on a treatment plan before any treatment starts. This is called a tumor board meeting. No single doctor decides alone. This approach is especially important for high-grade glioma in children because each case has unique features — tumour location, molecular profile, age of the child, and family circumstances — that affect what treatment is best. At CION, every paediatric brain tumour case is reviewed at a tumor board before a recommendation is made. We do not make rushed decisions.

Yes — and it is an essential part of care, not an afterthought. Children with high-grade glioma need support beyond the medical treatment itself: management of symptoms such as headaches, steroid side effects, and fatigue; nutritional support; physiotherapy to maintain strength and balance; speech and language therapy if swallowing or communication is affected; school liaison so that treatment is planned around the child’s educational needs; and psychological support for both the child and the family. At CION, supportive care is built into the treatment plan from day one. Our team includes nutritionists and psycho-oncologists who work alongside the medical team. You do not have to navigate this alone.