New-Onset Refractory Status Epilepticus (NORSE)
National Organization for Rare Disorders, Inc.
It is possible that the main title of the report New-Onset Refractory Status Epilepticus (NORSE) is not the name you expected.
New-onset refractory status epilepticus (NORSE) is defined as refractory status epilepticus without an obvious cause after initial investigations; "initial" typically refers to 1-2 days, which is adequate time to rule out strokes, brain masses, drug overdoses, and herpes encephalitis. Refractory status epilepticus (SE) is a condition in which patients suddenly experience continuous seizures or a flurry of very frequent seizures (the definition of "SE") that do not respond to standard anticonvulsant medications (the definition of "refractory"). Seizures are thought to be due to an excess of pro-inflammatory molecules in the brain, perhaps triggered by a simple viral infection, although no clear cause has ever been demonstrated. Affected individuals are most often treated for weeks in an intensive care unit because they require prolonged anesthesia with coma-inducing drugs to control their seizures. NORSE carries a high rate of complications and mortality, but a significant proportion of patients do eventually recover. Epilepsy (a life-long predisposition to unprovoked seizures) and cognitive issues are common among survivors although a small minority of them eventually return to a normal lifestyle.
Refractory status epilepticus (SE) is defined as a continuous seizures or a flurry of very frequent seizures that do not respond to standard anticonvulsant medications. It most commonly complicates an acute brain injury (stroke, trauma, infection, etc.) or a serious medical illness. It may also occur in people with a chronic seizure disorder. In a significant minority of cases, however, refractory SE strikes out of the blue and no cause can be identified. These cases are known as cryptogenic new-onset refractory SE, or NORSE.
American Epilepsy Society
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CURE: Citizens United for Research in Epilepsy
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Child Neurology Foundation
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Genetic and Rare Diseases (GARD) Information Center
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- Website: http://rarediseases.info.nih.gov/GARD/
Intractable Childhood Epilepsy Alliance (ICE)
- PO Box 365
- 250 Lewisville-Vienna Road
- Lewisville, NC 27023
- Tel: (336)918-9440
- Fax: (336)946-1197
- Website: http://www.icepilepsy.org
For a Complete Report
This is an abstract of a report from the National Organization for Rare Disorders (NORD). For a full-text version of this report, go to www.rarediseases.org and click on Rare Disease Database under "Rare Disease Information".
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Last Updated: 10/9/2014
Copyright 2014 National Organization for Rare Disorders, Inc.
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