Living with Benign partial epilepsy with secondarily generalized seizures in infancy
A rare infant seizure condition that starts with staring and may spread to the whole body, with normal development.
Understanding Benign partial epilepsy with secondarily generalized seizures in infancy
Seizures start with a pause in movement and staring, followed by convulsions (stiffening and jerking) that spread to the whole body. They usually occur in clusters and respond to treatment. Development is normal.
Signs & symptoms
GARD describes seizures with these features:
- Pause in movement
- Staring
- Stiffening and jerking of the whole body (tonic-clonic)
- Seizures that come in clusters
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
Epilepsy Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Seizure and epilepsy specialists (epileptologist)
- Expert care
- Expert lists: 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 Epilepsy Foundation
- 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 doesn't describe a cause for this condition yet.
Patient organizations
- Epilepsy FoundationEpilepsy · United States
Broader rare-disease groups
- 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 partial epilepsy with secondarily generalized seizures in infancy.
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