DIPG tumours
Useful Information about
DIPG Tumours
If you’ve just heard the news that your child might have DIPG, it can be a daunting and scary time. It is important to remember that you’re not alone. OSCAR’s is here to support you along this journey.
What is a Diffuse Intrinsic Pontine Glioma Tumour?
Diffuse Intrinsic Pontine Glioma (DIPG) -also known as Diffuse Midline Glioma (DMG) is most often very aggressive (high grade).The tumour develops in an area of the brainstem called the pons which controls vital functions like breathing, heart rate and some sensory information. DIPG typically affects children between five and nine years old.
There’s no easy way to say this, but it is very challenging to treat, with limited options at present. Unfortunately, the chance of recovering from DIPG is very low.
Symptoms of DIPG Tumours
The exact symptoms your child may experience will depend on the tumour’s size, location and grade, but can include:
- Weakness in the limbs
- Problems with coordination or walking
- Rapidly developing issues with facial expressions, speech, chewing, swallowing and eye movements
Read more about the different signs and symptoms of brain tumours – Click here
Tests for DIPG Tumours
To diagnose a DIPG, your doctor will run some tests to figure out the size and location of the tumour.
The tests could include:
- MRI and/or CAT scan
- A biopsy
Read more about testing for brain tumours – Click here
Treatment for DIPG Tumours
DIPG is currently incurable. Unfortunately less than 10% of children survive past two years. Surgery isn’t an option due to the tumour’s location in the brain stem, and chemotherapy doesn’t work on this type of tumour. Steroids are often the first treatment. Radiotherapy can be used to relieve symptoms but the effects are usually temporary and short-lived. There is only one current UK clinical trial, and some European and worldwide ones all with stringent selection criteria. We can find more information about this for you if you choose to. You can also ask your medical team.
Facing a DIPG diagnosis can be emotionally overwhelming for families. OSCAR’s are here to provide support during this difficult time. Dealing with news of a DIPG diagnosis is difficult, and we want to give you all the information you need to navigate this challenging journey.
The primary focus for a child with DIPG is improving the quality of their life. This includes pain management, symptom relief and looking after the child’s emotional needs. This is called palliative care.
What is palliative care?
Palliative care for a child with a brain tumour aims to improve their quality of life. It’s provided by a team of healthcare professionals who specialise in making your child as comfortable as possible, both physically and emotionally. This care can begin at any stage of the illness, not just at the end of life.
The focus is on managing pain, symptoms, and side-effects of treatment, while also addressing the child’s emotional and psychological needs. Palliative care includes support for the child’s family as well, offering guidance and assistance during a challenging time. The goal is to help the child and their family cope with the illness, make informed decisions, and provide comfort and dignity throughout the journey.
We know how difficult it must be if your child’s had this diagnosis.
If we can help support you in any way, please get in touch here.
We hope this page helps you feel informed and supported on your path with DIPG Tumours. At OSCAR’s we’re here for you every step of the way, offering hope, encouragement, and resources to help you and your loved ones face this challenge with courage and resilience. Remember, you are not alone – we stand together in this fight against DIPG Tumours, committed to making a difference in the lives of those affected.
