Living with Febrile infection-related epilepsy syndrome
A condition in which a healthy person suddenly develops seizures after a fever, and the seizures are hard to control with standard medicines.
Understanding Febrile infection-related epilepsy syndrome
Seizures increase over a few days and can become status epilepticus, a long seizure or cluster of seizures with no return to awareness between them. These seizures can't be controlled with standard anti-seizure medicines. The fever comes a day to two weeks before seizures, and no infection is found. It can occur at any age.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Fever
- Seizures that start in one part of the brain
- Headache
- Tiredness (lethargy)
- Behavior changes
- Loss of developmental skills
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 NORSE Institute 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 it, but doesn't name a gene. Cryptogenic means all known causes have been ruled out.
Also known as: acute encephalitis with refractory repetitive partial seizures; acute non-herpetic encephalitis with severe refractory status epilepticus; aerrps; desc syndrome; devastating epileptic encephalopathy in school-aged children; febrile infection related epilepsy syndrome
Patient organizations
- NORSE InstituteFebrile infection-related epilepsy syndrome · United States
- Epilepsy FoundationEpilepsy · United States
You are more than your diagnosis
Perspectives from people navigating life with Febrile infection-related epilepsy syndrome.
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