Living with Infantile convulsions and choreoathetosis
An inherited condition with seizures in the first year of life and later attacks of unusual movements.
Understanding Infantile convulsions and choreoathetosis
The seizures are called benign familial infantile epilepsy. The movement attacks (choreoathetotic dyskinetic attacks) happen in childhood or adolescence.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Seizures that start in a part of the brain (focal seizures)
- Attacks of writhing, jerky movements (paroxysmal choreoathetosis)
- Attacks of muscle tightness (paroxysmal dystonia)
- Infantile spasms (less common)
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 seizure and epilepsy specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Dystonia Medical Research Foundation and Epilepsy Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Seizure and epilepsy specialists (epileptologist)
- Expert care
- Expert lists: Dystonia Medical Research Foundation, Epilepsy 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 Dystonia Medical Research 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
GARD says it is inherited in an autosomal dominant pattern, meaning one changed copy of the gene can be enough. It doesn't name a gene.
Also known as: icca; icca syndrome; infantile convulsion and choreoathetosis syndrome; paroxysmal kinesigenic dyskinesia and infantile convulsion; paroxysmal kinesigenic dyskinesia and infantile convulsions; paroxysmal kinesigenic dyskinesia with infantile convulsions
Patient organizations
- Dystonia Medical Research FoundationInfantile convulsions and choreoathetosis · United States
- Epilepsy FoundationEpilepsy · United States
You are more than your diagnosis
Perspectives from people navigating life with Infantile convulsions and choreoathetosis.
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