Living with Benign neonatal seizures
An inherited condition with repeated seizures in newborns that usually go away within months.
Understanding Benign neonatal seizures
Seizures begin around day 3 of life and usually go away within 1 to 4 months. They may involve one side of the brain or both. Most babies develop normally, though some develop intellectual disability or a rippling muscle movement called myokymia. About 15 percent of people have seizures again later in life.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Seizures in newborns
- Muscle stiffness (tonic seizure)
- Muscle jerking (clonic seizure)
- Pauses in breathing (apnea)
- Bluish color around the mouth
- Seizures on one side of the brain
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, genetic specialists and 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
- Brain and nervous system specialists (neurologists); Genetic specialists (geneticists); 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 KCNQ2 Cure Alliance 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
Changes in genes cause this condition. It is autosomal dominant, so one changed copy of the gene is enough.
Also known as: autosomal dominant form of benign neonatal seizures; benign familal neonatal seizures; benign familial convulsion; benign familial convulsions; benign familial neonatal convulsions; benign familial neonatal epilepsy
Patient organizations
- KCNQ2 Cure AllianceBenign neonatal seizures · United States
- Epilepsy FoundationEpilepsy · United States
You are more than your diagnosis
Perspectives from people navigating life with Benign neonatal seizures.
Explore research for Benign neonatal seizures
Explore actively recruiting Benign neonatal seizures studies with HealthSpark.
Find actively recruiting studies for Benign neonatal seizures with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
Powered by HealthSpark, our AI chat helper
I can help you find recruiting Benign neonatal seizures studies. Enter a ZIP code, address or city below and I'll look within 50 miles.
Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
Get Signals for Benign neonatal seizures
Stay in the loop with community stories and updates from medical researchers.
Create a living journal that talks back
HealthStory evolves private journaling with a living AI journal that talks back and asks thoughtful questions, helping you capture your Benign neonatal seizures experiences more deeply and prepare for better conversations with your doctors and care team.
Your journal is private. Sharing your story publicly is a separate choice, made with Share your story above.