Living with Cryptogenic late-onset epileptic spasms
A rare epilepsy syndrome with clusters of seizures called spasms that start after age 1.
Understanding Cryptogenic late-onset epileptic spasms
The spasms come in clusters and are linked with other seizure types (tonic seizures and atypical absences) and a decline in thinking skills. Language difficulties and behavior problems are frequent. Brain wave tests (EEG) show a typical pattern. It starts in childhood.
Signs & symptoms
GARD doesn't list a symptom list for this condition. Its summary mentions these:
- Clusters of epileptic spasms
- Tonic seizures and atypical absences
- Decline in thinking skills
- Language difficulties
- Behavior problems
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 Epilepsy 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 changes in genes cause this condition. It doesn't name a gene. Cryptogenic means no cause was found.
Also known as: late-onset infantile spasms
Patient organizations
- Epilepsy FoundationCryptogenic late-onset epileptic spasms · United States
- Child Neurology FoundationCryptogenic late-onset epileptic spasms · United States
You are more than your diagnosis
Perspectives from people navigating life with Cryptogenic late-onset epileptic spasms.
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