Intractable EPILEPSY
Majority of the girls represented in this group have severe intractable drug resistant epilepsy. The spectrum varies from having seizures daily to having some control at some point in life, and in a rare case, no seizures are present. It is important to know that every seizure is causing neuronal damage.
Intractable epilepsy is a seizure disorder in which a patient’s seizures fail to come under control with treatment. These seizures are also referred to as “uncontrolled” or “refractory.”
Frequent intractable epilepsy interferes with a patient’s quality of life and is life threatening. Every interruption of brain activity can causes neuronal damage.
Most neurons in the central nervous system cannot repair or renew themselves. So, if some die through illness or damage, the patient can permanently lose some of the previously acquired skills like walking or talking.
Additionally, people living with seizure disorder are at risk for possible accidents during a seizure, causing physical injury.
The brain is an organ that controls EVERY process that regulates our body, including our heart beating, lungs breathing, and others. Frequent and prolonged interruption of brains activity can cause bodys vital organs to fail.
SEIZURES
Seizures symptoms vary and can include a sudden change in awareness or full loss of consciousness, unusual sensations or thoughts, involuntary twitching or stiffness in the body or severe stiffening and limb shaking with loss of consciousness (a convulsion). There are over 40 types of seizures.
There are two major groups of seizures: 1).Focal Onset and 2). Generalized Onset.
Focal onset seizures start in one area of the brain and can spread across the brain and cause mild or severe symptoms, depending on how the electrical discharges spread.
Generalized seizures can start as focal seizures that spread to both sides of the brain.
They also can occur as “generalized onset” seizures in which seizure activity starts simultaneously over both sides of the brain. Generalized onset seizures usually start during childhood, caused by abnormal regulation between parts of the brain.
Read more on seizures and specific types from American Epilepsy Society.
STATUS EPILEPSY
(SE) is something that our kiddos experience often. Status epilepticus is a medical emergency associated with significant morbidity and mortality. SE is defined as a continuous seizure lasting more than 5 minutes, or two or more seizures without full recovery of consciousness between. Any seizure that lasts more than 5 minutes needs to be treated as SE.
It has been estimated that up to 150,000 cases of SE occur annually in the US, with 55,000 associated deaths. (Epilepsy Foundation)
Sudden Unexpected Death from Epilepsy ( SUDEP)
is the sudden, unexpected death of someone with epilepsy, who was otherwise healthy. In SUDEP cases, no other cause of death is found when an autopsy is done. Each year, about 1 in 1,000 people with epilepsy die from SUDEP.
SUDEP is the leading cause of death in people with uncontrolled seizures.