Understanding DIPG Symptoms: A Guide for Siblings

When a family member is diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG), it affects everyone in the family, including siblings. Explaining DIPG symptoms to siblings is crucial for maintaining strong family bonds and fostering a supportive home environment. The Pediatric Brain Tumor Foundation is committed to providing families with the information and support needed to navigate these challenging times.

What is DIPG?

DIPG is a type of brain tumor that primarily affects children, usually between the ages of 5 and 10.  It is located in the pons, a part of the brainstem that controls essential bodily functions such as breathing, sleeping, and balance. Due to its location and the way it grows within the brain tissue, DIPG is considered highly challenging to treat.

Recognizing the Symptoms

For siblings, understanding what their brother or sister is experiencing can be confusing and distressing. Common symptoms of DIPG include difficulty walking, problems with balance, changes in eye movements, facial weakness, and sudden changes in behavior or learning capabilities. These symptoms occur because the tumor affects the brain area responsible for these functions.

Communication Is Key

Open and honest communication about what DIPG is and how it affects their sibling(s) can help reduce fear and confusion. Use age-appropriate language to explain the symptoms. For example, you might say, “Your brother’s legs might not work the same way yours do because his brain is sending different signals.” This helps siblings understand the physical changes without overwhelming them.

Supporting Each Other

Siblings need to feel that they are still a vital part of the family. Encourage them to be involved in their sibling’s daily routines as much as possible. This involvement can range from reading stories together to spending quiet time in each other’s company. Such activities not only help maintain a sense of normalcy but also strengthen the bonds between them.

The Role of Routine

Maintaining a routine can be comforting to children and can help create a sense of stability. Keep the daily schedule as regular as possible, and make sure to include fun activities that the siblings can enjoy together. This routine helps them feel secure and reassures them that, despite the changes happening around them, they still have moments they can look forward to together.

Encouraging Emotional Expression

It’s important for siblings to express their feelings about their brother or sister’s illness. Provide them with opportunities to talk about their fears, sadness, or even anger. This could be through conversation, art, or play. Acknowledging these feelings as normal and valid can help siblings cope with the emotional impact of DIPG.

Professional Support

Sometimes, professional guidance from counselors or child psychologists is beneficial. These professionals can help siblings understand their emotions, cope with the changes in their family, and develop healthy ways to support their brother or sister. Engaging with support groups can also provide an outlet for connecting with other children who are in similar situations.

Educational Support

As the family focuses on the care of the child with DIPG, siblings might feel overlooked. Ensure they receive the attention they need in their educational journey. Talk to their teachers about the situation so they can provide additional support at school.

Staying Informed and Involved

For more detailed information and support, visit the Pediatric Brain Tumor Foundation at curethekids.org, and support our mission to accelerate progress for kids with brain cancer at team.curethekids.org/campaign/594622/donate. Our website offers resources for the entire family and ways to get involved in supporting children with brain cancer.

Keeping siblings informed and involved is essential in helping them understand the challenges their brother or sister is facing. It is also crucial for maintaining the strength of family bonds during such a difficult time. By providing siblings with knowledge, support, and stability, families can manage the impact of DIPG together. The Pediatric Brain Tumor Foundation is here to assist every step of the way, ensuring that no family has to navigate this journey alone.

Please note: The information provided in this blog is for general educational purposes only and is not intended to replace professional medical advice, diagnosis, or treatment. Pediatric brain tumors vary widely, and treatment decisions should always be made in consultation with your child’s medical team, who can provide guidance specific to your child’s unique situation. If you have questions or concerns about your child’s care, we encourage you to speak directly with your healthcare providers.