Living with Acute necrotizing encephalopathy of childhood
A rare brain illness in healthy children, with sudden seizures and changes in alertness after a respiratory or stomach infection.
Understanding Acute necrotizing encephalopathy of childhood
It usually follows a respiratory or gastrointestinal infection, such as mycoplasma or influenza. Liver function may also be affected. Brain MRI may show matching lesions on both sides of the brain, mostly in the thalami and brainstem.
Signs & symptoms
Symptoms vary from child to child. GARD's summary says they include:
- Sudden seizures
- Changes in alertness (altered consciousness)
- Quick decline in brain and nerve function
- Liver problems of varying degrees
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
Specialists who may be involved include brain and nervous system specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists)
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- 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 rare disease patient organizations for support
- 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
GARD says it follows a respiratory or gastrointestinal infection, such as mycoplasma or influenza, in a previously healthy child. It doesn't list a gene cause.
Also known as: anec; isolated acute necrotizing encephalopathy; isolated ane
Patient organizations
Rare-disease groups that can help
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Acute necrotizing encephalopathy of childhood.
Explore research for Acute necrotizing encephalopathy of childhood
Explore actively recruiting Acute necrotizing encephalopathy of childhood studies with HealthSpark.
Find actively recruiting studies for Acute necrotizing encephalopathy of childhood with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
Powered by HealthSpark, our AI chat helper
I can help you find recruiting Acute necrotizing encephalopathy of childhood studies. Enter a ZIP code, address or city below and I'll look within 50 miles.
Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
Get Signals for Acute necrotizing encephalopathy of childhood
Stay in the loop with community stories and updates from medical researchers.
Create a living journal that talks back
HealthStory evolves private journaling with a living AI journal that talks back and asks thoughtful questions, helping you capture your Acute necrotizing encephalopathy of childhood experiences more deeply and prepare for better conversations with your doctors and care team.
Your journal is private. Sharing your story publicly is a separate choice, made with Share your story above.