Living with Childhood brain stem glioma
A rare tumor in the brain stem of children that can cause trouble with walking, movement, vision, hearing, and headaches.
Understanding Childhood brain stem glioma
The tumor can be benign (noncancerous) or malignant (cancerous). How severe it is and what symptoms appear depend on the size and location of the tumor and how quickly it grows.
Signs & symptoms
Symptoms vary from child to child. GARD says common features include:
- Trouble walking
- Not being able to move one side of the body or face
- Vision or hearing problems
- Headaches, especially in the morning
- Nausea and vomiting
- Unusual sleepiness or behavior changes
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Your doctor may refer you to a specialist who knows rare conditions.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Alex's Lemonade Stand Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- A doctor familiar with rare conditions, plus specialists as needed
- Expert care
- Expert lists: Alex's Lemonade Stand Foundation
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with Alex's Lemonade Stand Foundation and other patient organizations
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
In most cases the cause is unknown. Certain genetic conditions, such as neurofibromatosis type I, are linked to a higher risk.
Also known as: brain stem glioma of childhood; childhood brainstem glioma; childhood glioma of brain stem; childhood glioma of brainstem; childhood glioma of the brain stem; childhood glioma of the brainstem
Patient organizations
- Alex's Lemonade Stand FoundationChildhood brain stem glioma · United States
- Pediatric Brain Tumor FoundationChildhood brain stem glioma · United States
You are more than your diagnosis
Perspectives from people navigating life with Childhood brain stem glioma.
Explore research for Childhood brain stem glioma
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- Recruiting studies from ClinicalTrials.gov
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- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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