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Living with Developmental and epileptic encephalopathy, 13

A condition linked to the SCN8A gene with repeated seizures, abnormal brain function, and intellectual disability that start in infancy.

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Understanding Developmental and epileptic encephalopathy, 13

Developmental and epileptic encephalopathy 13, also called SCN8A-related epilepsy with encephalopathy, causes repeated seizures, abnormal brain function, and intellectual disability.

Signs typically begin in infancy. Most people have more than one type of seizure. Seizure frequency ranges from hundreds per day to fewer than one a month. In many people, seizures do not respond to anti-seizure medicines. Intellectual disability can be mild to severe.

Signs & symptoms

Symptoms vary from person to person. GARD lists these among the most common:

  • Several types of seizures
  • Infantile (epileptic) spasms
  • Severe intellectual disability
  • Global developmental delay
  • Autistic behavior
  • Small head size (microcephaly)

Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.

Diagnosis

  1. Talk with your doctor

    Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.

  2. See a specialist

    Specialists who may be involved include seizure and epilepsy specialists.

  3. Ask which tests can help

    Your care team will decide which exams and tests can confirm the diagnosis.

  4. Connect 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 SCN8AEpilepsy and Related Disorders 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
Bring these questions to your next doctor visit
Can genetic testing of the SCN8A gene confirm the diagnosis?
Which seizure treatments might work when medicines have not?
Which therapies can support development?

Quick facts

InheritanceAutosomal Dominant

GARD ties this condition to the SCN8A gene. It lists autosomal dominant inheritance, so a changed copy of the gene from one parent can be enough.

Also known as: dee13; developmental and epileptic encephalopathy 13; early infantile epileptic encephalopathy 13; early infantile epileptic encephalopathy caused by mutation in scn8a; early infantile epileptic encephalopathy-13; eiee13

Patient organizations

Source: NIH GARD · Developmental and epileptic encephalopathy, 13GARD ID 13085 · GARD page updated September 2026 · Plain-language summary by Know Rare; editorial review pending. General information, not medical advice.

You are more than your diagnosis

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