Living with Infant epilepsy with migrant focal crisis
A very rare infant epilepsy with muscle jerks that move around the body and a progressive brain condition.
Understanding Infant epilepsy with migrant focal crisis
GARD says three cases have been reported. Continuous focal muscle jerks appeared in the first months of life. Longer seizures involving both sides of the body came later, followed by low muscle tone and poor coordination. Scans showed shrinkage of the brain's outer layer (cortical atrophy).
Signs & symptoms
Symptoms vary from person to person. GARD describes these:
- Continuous muscle jerks (myoclonus) in the first months of life
- Long seizures that involve both sides of the body
- Generalized tonic-clonic seizures
- Low muscle tone (hypotonia)
- Poor coordination (ataxia)
- Brain shrinkage seen on scans
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
- 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
The cause is unknown.
Also known as: early-onset progressive encephalopathy with migrant continuous myoclonus
Patient organizations
- Epilepsy FoundationEpilepsy · United States
Broader rare-disease groups
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Infant epilepsy with migrant focal crisis.
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