Living with Malignant migrating partial seizures of infancy
A severe form of epilepsy starting soon after birth, with frequent seizures and developmental delays.
Understanding Malignant migrating partial seizures of infancy
Partial seizures usually begin shortly after birth and often do not respond to treatment. They may be rare at first but within months can come in clusters of 5 to 30, several times per day. Signs depend on which part of the brain is involved.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Seizures, including focal and tonic-clonic seizures
- Loss of skills already gained (developmental regression)
- Developmental delay
- Low muscle tone (hypotonia)
- Smaller than usual head (microcephaly)
- Not able to walk
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
FamilieSCN2A 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: 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
The cause is not fully understood. New (de novo) changes in certain genes have been found in several people. Even with a gene found, most cases occur with no family history.
Also known as: malignant migrating focal seizures of infancy; malignant migrating partial epilepsy of infancy; malignant migrating partial seizures in infancy; migrating partial epilepsy of infancy; migrating partial seizures in infancy; migrating partial seizures of infancy
Patient organizations
- FamilieSCN2A FoundationMalignant migrating partial seizures of infancy · United States
- Epilepsy FoundationEpilepsy · United States
You are more than your diagnosis
Perspectives from people navigating life with Malignant migrating partial seizures of infancy.
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