What Is DIPG? A Guide for Parents

If you're reading this, your child may have just been diagnosed with DIPG. We are so sorry. We are a family who has walked this road with our daughter, Gabriella, and we want you to know you are not alone.

Diffuse Intrinsic Pontine Glioma (DIPG), now often called diffuse midline glioma (DMG), is a rare tumor in children. This page explains what it is in plain words, the signs to watch for, what happens next, and where your family can find support.

What is DIPG?

DIPG is a fast-growing tumor that starts in the brainstem, in an area called the pons. The pons helps control vital body functions, as well as the nerves for vision, hearing, speech, swallowing, and movement. That is why the signs of DIPG often show up in how a child moves, sees, talks, or eats. (Together by St. Jude)

A note on the name: DIPG and DMG

In 2021, the World Health Organization updated how brain and spinal cord tumors are classified. Under that update, DIPG is grouped under the name diffuse midline glioma, H3 K27-altered. You may hear your child's doctors say "DMG" or "diffuse midline glioma." Many families still say DIPG, so we use DIPG on this page. (National Cancer Institute; St. Jude Children's Research Hospital)

Who gets DIPG?

DIPG is rare. In the United States, about 300 children are diagnosed with DIPG each year. It most often affects children between the ages of 5 and 10, but it can happen in younger children and teens. DIPG is rare in adults. (National Cancer Institute)

Signs parents may notice

DIPG symptoms often come on quickly, usually over a short time (often about a month before diagnosis). (National Cancer Institute; Together by St. Jude) Check with your child's doctor right away if your child has:

• Trouble moving their eyes (an eye turned inward), or vision problems
• Problems talking, chewing, or swallowing
• Drooping on one side of the face
• A morning headache, or a headache that goes away after vomiting
• Nausea and vomiting
• Weakness in the arms or legs
• Loss of balance or trouble walking
• Changes in behavior, or trouble learning in school

These signs can be caused by things other than DIPG. The only way to know for sure is to see your child's doctor. (National Cancer Institute)

How DIPG is diagnosed

Your child's doctor will ask when the symptoms started and how often they happen, ask about your family's health history, and do a physical exam that includes a check of the nerves and brain (a neurological exam). Depending on the results, the doctor may order more tests. (National Cancer Institute) An MRI of the brain is often part of this. (ChadTough Defeat DIPG Foundation)

Sometimes the tumor blocks the normal flow of fluid around the brain. This is called hydrocephalus, and some children need a small procedure to place a shunt, a thin tube that drains the extra fluid and eases symptoms. (ChadTough Defeat DIPG Foundation)

Treatment

Radiation therapy is the standard and most effective treatment for DIPG. (St. Jude Children's Research Hospital) Your child's care team may also talk with you about medicines to help with symptoms and about clinical trials.

We want to be honest with you, gently: there is no cure for DIPG today. Treatment aims to ease discomfort and help extend life. (Mayo Clinic) Researchers, including teams at St. Jude, are working to find new treatments. (St. Jude Children's Research Hospital)

What to do next

A DIPG diagnosis can feel overwhelming, and you may feel pressure to decide quickly. Experienced families recommend taking time to learn about your options before you decide. (ChadTough Defeat DIPG Foundation) Some questions to bring to your child's care team:

• What treatment do you recommend, and what is its goal?
• Is my child eligible for any clinical trials?
• Can we get a second opinion?
• Who can we call with questions, day or night?
• What support is there for our other children and for us as parents?

Free help from people who know DIPG:

• ChadTough's DIPG/DMG Nurse Navigator: free one-on-one support from nurses with pediatric cancer experience, who can help you understand the diagnosis and treatment options and connect you to experts and resources (U.S. only). chadtough.org/my-dipg-navigator
• DIPG.org: information and support from families and experts. dipg.org

About prognosis

You will likely have questions about your child's chances. These are some of the hardest questions a parent can ask. Your child's cancer care team is in the best position to talk with you about your child's prognosis. (National Cancer Institute) It's OK to ask them as many times as you need, and to ask for time to take it in.

You are not alone: support from Gabriella's Smile Foundation

Gabriella's Smile Foundation supports San Antonio families facing childhood cancer, including DIPG.

• Visit us: Children's Cancer Support Center, 477 Spencer Ln, San Antonio TX 78201. Open Tuesday and Thursday, 10 AM to 3 PM. Please call (210) 670-6200 before visiting. Learn about the Children's Cancer Support Center
• DIPG Support resources: open the "DIPG Support" section on our Family Resources page.
• See how we help families: Pediatric cancer support
• Ask for support: Apply for support

Questions? Email info@GabriellasSmile.org or call (210) 670-6200. Se habla español.

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This page is for general information and is not medical advice. Please talk with your child's care team about your child's care.

References

1. National Cancer Institute. Childhood Diffuse Intrinsic Pontine Glioma (DIPG) (patient version). https://www.cancer.gov/types/brain/patient/diffuse-intrinsic-pontine-glioma
2. National Cancer Institute. Childhood Astrocytomas, Other Gliomas, and Glioneuronal/Neuronal Tumors Treatment (PDQ, health professional version), for the 2021 WHO classification. https://www.cancer.gov/types/brain/hp/child-glioma-treatment-pdq
3. Together by St. Jude. Diffuse Intrinsic Pontine Glioma (DIPG) in Children. https://together.stjude.org/en-us/conditions/cancers/diffuse-intrinsic-pontine-glioma-dipg.html
4. St. Jude Children's Research Hospital. Diffuse Intrinsic Pontine Glioma (DIPG) Treatment. https://www.stjude.org/care-treatment/treatment/childhood-cancer/brain-tumors/diffuse-intrinsic-pontine-glioma.html
5. Mayo Clinic. Diffuse midline glioma: Symptoms and causes. https://www.mayoclinic.org/diseases-conditions/diffuse-midline-glioma/symptoms-causes/syc-20584386
6. ChadTough Defeat DIPG Foundation. Symptoms & Diagnosis. https://chadtough.org/my-dipg-navigator/about-dipg-dmg/navigating-disease/diagnosis/symptoms-diagnosis/
7. ChadTough Defeat DIPG Foundation. My DIPG Navigator. https://chadtough.org/my-dipg-navigator/
8. DIPG.org. What is DIPG? https://dipg.org/facts/what-is-dipg/