Living with Alternating hemiplegia of childhood
A neurological condition with repeated episodes of temporary paralysis, often on one side of the body, starting in infancy or early childhood.
Understanding Alternating hemiplegia of childhood
Episodes usually begin before 18 months of age and last from minutes to days. The paralysis may switch sides or affect both sides. People can also have sudden attacks of uncontrollable muscle activity, such as involuntary limb movements, muscle tensing, eye movements, or shortness of breath. Sudden skin flushing or paleness can also occur. Triggers can include stress, extreme tiredness, cold temperatures, or bathing.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Temporary paralysis, often on one side
- Unusual eye movements
- Trouble with balance and coordination (ataxia)
- Constipation
- Loss of appetite
- 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
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 Alternating Hemiplegia of Childhood Foundation (AHCF)
- 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 lists autosomal dominant inheritance, so a changed copy of a gene from one parent can be enough. It doesn't name a gene on this page.
Also known as: adrenal hypoplasia congenita; ahc; alternating hemiplegia syndrome; childhood alternating hemiplegia; congenital adrenal gland hypoplasia; congenital adrenal hypoplasia
Patient organizations
- Alternating Hemiplegia of Childhood Foundation (AHCF)Alternating hemiplegia of childhood · United States
You are more than your diagnosis
Perspectives from people navigating life with Alternating hemiplegia of childhood.
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