Living with Lennox-Gastaut syndrome
A severe childhood epilepsy with several seizure types, developmental delay, and a distinct brain wave pattern.
Understanding Lennox-Gastaut syndrome
People have more than one type of seizure, developmental delays, and a particular pattern on an EEG (brain wave test). Seizures usually begin between ages 3 and 5. Tonic seizures, which stiffen the muscles, are the most common. Seizures often do not respond well to anti-epileptic medicines.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Tonic seizures (muscles stiffen)
- Atonic seizures (sudden loss of muscle tone)
- Atypical absence seizures
- Intellectual disability
- Behavior changes
- Falls
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
LGS Foundation and 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: LGS Foundation, 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 LGS Foundation 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 lists the condition as autosomal dominant but does not name a gene. Changes in genes are said to cause it.
Also known as: epileptic encephalopathy lennox-gastaut type; lennox syndrome; lgs; lgs - lennox-gastaut syndrome
Patient organizations
- LGS FoundationLennox-Gastaut syndrome · United States
- Epilepsy FoundationEpilepsy · United States
You are more than your diagnosis
Perspectives from people navigating life with Lennox-Gastaut syndrome.
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- Recruiting studies from ClinicalTrials.gov
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- Eligibility is confirmed by the study team
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