The most common symptoms found in patients diagnosed with DIPG/DMG include the following:
- Facial weakness or drooping
- Trouble with walking and/or coordination
- Slurring of speech
- Trouble chewing or swallowing
- Double or blurred vision
- Uncontrolled eye movements and/or drooping eyelids
- Nausea and vomiting
DIPG/DMG tumors can change quickly, so you may notice symptoms worsening rapidly.
Once your child has any of the above symptoms and you seek a medical evaluation, your physician may order bloodwork and a CT scan and/or MRI (magnetic resonance imaging). If a CT scan is done first and anything abnormal is found, the next step is typically an MRI.
An MRI scan produces detailed images of the brain and varies in length of time required, usually between 30 and 60 minutes. It may take longer if contrast material is involved. A patient must remain extremely still without moving during the process for the MRI. It might be necessary to sedate a very young or nervous patient to help them remain still.
Upon diagnosis, your child may remain in the hospital for a few days for additional testing, to manage symptoms, and to start to prepare for the next steps. One symptom that may need to be addressed immediately is hydrocephalus, which occurs when the tumor blocks the flow of cerebrospinal fluid and causes a buildup in the ventricles. Some patients’ initial symptoms are caused by hydrocephalus and require a low-risk surgery to place a shunt, a tube that redirects fluid away from the brain to alleviate symptoms.
Soon after diagnosis, you may be encouraged to consider a biopsy. This will allow the medical team to understand the biology of your child’s tumor. It will provide important information to help determine the best treatment options. Biopsies are encouraged, as they are prerequisites to some trial entry, and they provide important knowledge regarding mutation types to create customizable treatment plans. It is also highly encouraged to have a biopsy for DIPG/DMG conducted at a center of excellence with surgeons experienced with the procedure with DIPG/DMG patients.
Receiving a DIPG/DMG diagnosis is nothing short of overwhelming. You will likely be encouraged to act with urgency in choosing your next steps. It is extremely important to learn about your options before you make any decisions.