Diffuse Intrinsic Pontine Glioma (DIPG), also known as Diffuse Midline Glioma, is an aggressive, rare type of brain tumor that typically affects children.
This childhood brain tumor forms in the middle part of the brain stem, and is thus some times referred to as brainstem glioma. It causes symptoms to develop fast, and since this area is such a delicate part of the brain, surgery is still not possible.
Signs of a Diffuse Intrinsic Pontine Glioma brain tumor typically range from nausea, headaches and vomitting to vision loss, loss of balance and behavioral changes, and since DIPG is known to progress rapidly, these symptoms often worsen quickly.
The first signs of a brain tumor generally include:
In cases where the tumor is affecting the spine, patients may also experience symptoms such as:
In addition, children may also be affect by stunted growth, and find themselves reaching developmental milestones slower than others. Problems with coordination, gait, talking and vision are common.
Unlike some brain tumors that can be surgically removed, DIPGs develop in and around the brain stem, which often makes this procedure impossible, if not extremely risky. For the same reason taking a biopsy for analysis and genetic testing is usually impossible, the standard approach for treating aggressive tumors is also not usually an option.
Instead, doctors currently employ radiotherapy in hopes of destroying the cancer cells whislt inflicting as little damage to surrounding cells as possible. However, none of the techniques have shown much promise, and the overall survival of patients diagnosed with DIPG is only around months.
This is often is the primary choice for DIPG treatment. The procedure utilizes a machine that directs energy to reduce and shtink the tumor without damaging the nearby tissues. The course typically lasts six weeks, with daily application sessions
Some patients may be prescribed drugs such as corticosteroids to reduce inflammation. The medication is administered before or after your child’s radiation therapy to help reduce swelling in the brain; one of the main causes of painful symptoms. Unfortunately side effects can be quite unpleasant, therefore the potential benefits will need discussing with you doctor
Unfortunately, in chemotherapy is another standard cancer/tumor treatment that does not work with DIPG. However, some researchers are still looking into how a combination of chemo and radiotherapy might provide additional benefits over singular application.
Palliative care can provide specialist medical, emotional and mental support tailored to the needs of you, your child and family. Professionals can work together with you to develop an effective plan on how you can better manage the symptoms of DIPG, and prioritize the quality of life for those forced to deal with such a daunting diagnosis.
DIGP is reported to affect approx. 5.8 persons in every 100,000. In the USA roughly 200-300 new cases are diagnosed in children each year.
DIPG usually develops in children between the ages of 5-9. Although it is much more common in earlier years, it can develop at any age during childhood.
Unfortunately DIPG is considered fatal. Approx 10% of patients survive up to 2 years after diagnosis, whilst just 2% of patients are reported to survive up to 5 years.
Outside of official medical literature, it can often be difficult to find any effective information regarding the treatment of rare diseases.
Talk to your doctor about any local support group meetings, as well as recommended online forums and resources. For example, four organizations you can visit online include:
This is where patient organization can help connect that patients and families of those learning to manage DIPG. In addition to the collective knowledge shared within these groups, simply being part of a community positively trying to help each other can greatly improve mental well-being and thus, quality of life.