Living with Benign familial nocturnal alternating hemiplegia of childhood
A rare childhood nerve condition with night attacks of crying followed by weakness on one or both sides.
Understanding Benign familial nocturnal alternating hemiplegia of childhood
Children have repeated attacks of screaming or crying at night, followed or joined by weakness on one side of the body, or sometimes both. It is not linked to problems with the nervous system or development, but may come with mild behavior differences. It starts in infancy and childhood.
Signs & symptoms
GARD describes these as the main features:
- Night attacks of screaming or crying
- Weakness (hemiplegia) on one side of the body
- Sometimes weakness on both sides
- Mild behavior differences
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 and genetic 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); Genetic specialists (geneticists)
- 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 changes in genes cause this condition, but doesn't name a specific gene yet.
Also known as: benign familial nocturnal alternating hemiplegia in childhood; benign nocturnal alternating hemiplegia of childhood
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 Benign familial nocturnal alternating hemiplegia of childhood.
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