Living with West syndrome
A condition of infancy with a special type of seizure called infantile spasms and loss of developmental skills.
Understanding West syndrome
Spasms usually begin in the first year, often at 4 to 8 months. The body bends forward and the arms and legs stiffen, often on waking or after feeding, in clusters. Developmental skills can be lost, and an EEG shows a chaotic brain-wave pattern (hypsarrhythmia). Many conditions can cause it, so finding the cause matters, but in some children none is found.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Infantile spasms
- Loss of developmental skills
- Sudden muscle jerks (myoclonus)
- Clusters of spasms on waking or after feeding
- Chaotic brain waves on an EEG
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
FamilieSCN2A Foundation and Epilepsy Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Seizure and epilepsy specialists (epileptologist)
- Expert care
- Expert lists: FamilieSCN2A 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 FamilieSCN2A 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 says many conditions that injure the brain can lead to spasms, including birth problems, brain differences, metabolic disorders, and genetic disorders. In some children no cause is found.
Also known as: iess; infantile epileptic spasms syndrome; infantile spasms; infantile spasms syndrome; intellectual disability-hypsarrhythmia syndrome; west's syndrome
Patient organizations
- FamilieSCN2A FoundationWest syndrome · United States
- Child Neurology FoundationWest syndrome · United States
- Epilepsy FoundationEpilepsy · United States
You are more than your diagnosis
Perspectives from people navigating life with West syndrome.
Explore research for West syndrome
Explore actively recruiting West syndrome studies with HealthSpark.
Find actively recruiting studies for West syndrome 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
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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