Living with Benign familial neonatal-infantile seizures 1
An inherited seizure condition in young children, usually starting between 3 and 24 months of age.
Understanding Benign familial neonatal-infantile seizures 1
Seizures usually begin between 3 and 24 months of age and can come in clusters over a day or several days. The head and eyes slowly move to one side, the body stops moving and breathing, and the body may turn blue and jerk. After the seizure, the baby is normal again. Mental and physical development are normal.
Signs & symptoms
GARD describes seizures with these features:
- Head and eyes slowly turning to one side
- Body stopping movement and breathing
- Body turning blue
- Jerking movements
- Seizures in clusters over a day or days
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
FamilieSCN2A and Epilepsy Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Seizure and epilepsy specialists (epileptologist)
- Expert care
- Expert lists: FamilieSCN2A, 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 FamilieSCN2A 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
This is a genetic disorder with several types caused by changes in different genes. Type 1 is linked to a gene on chromosome 19q. It is autosomal dominant, so one changed copy is enough.
Also known as: seizures, benign familial infantile, 1
Patient organizations
- FamilieSCN2ABenign familial neonatal-infantile seizures 1 · United States
- Epilepsy FoundationEpilepsy · United States
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