Living with Developmental and epileptic encephalopathy, 26
A neurological condition in children with several types of seizures, developmental delay, and speech and behavior challenges.
Understanding Developmental and epileptic encephalopathy, 26
Seizures start late in infancy or in the first few years of life. Children may have developmental delays, intellectual disability, poor speech, and behavior differences. An EEG test, which shows abnormal electrical activity in the brain, can help diagnose DEE26.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Several types of seizures
- Infantile spasms
- Global developmental delay
- Absent speech
- Atonic seizures (sudden loss of muscle tone)
- Tonic-clonic seizures
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 Simons Searchlight 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 doesn't name a gene. It lists autosomal dominant inheritance, so a changed copy of the gene from one parent can be enough.
Also known as: dee26; developmental and epileptic encephalopathy 26; early infantile epileptic encephalopathy 26; early infantile epileptic encephalopathy caused by mutation in kcnb1; eiee26; epileptic encephalopathy, early infantile, 26
Patient organizations
- Simons SearchlightDevelopmental and epileptic encephalopathy, 26 · United States
- Epilepsy FoundationEpilepsy · United States
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