Epilepsy affects 470,000 children in the United States. [1] Lennox-Gastaut Syndrome accounts for 1-4% of epilepsy (seizure disorder) occurring in children, and is described as “a devastating pediatric epilepsy syndrome”. [2, 3] Lennox-Gastaut Syndrome (LGS) is a particularly severe type of epilepsy, in which multiple types of seizures frequently, and may also experience cognitive or developmental delay and intellectual disability. [4] Sometimes, LGS is caused by an underlying condition, others it has no known cause. [4]

How is Lennox-Gastaut Syndrome Diagnosed?

There is no single test that can diagnose LGS, and often physical examination is normal [2] LGS is most often diagnosed by monitoring brain activity via electroencephalogram (EEG), where brain wave patterns are tracked and recorded. [5] Seizures can be detected using EEG. Depending on the type of LGS—symptomatic vs. cryptogenic LGS—a neurological examination may indicate intellectual disability or “abnormalities in mental status function” [2], abnormalities in consciousness, reflexes, some nerve function, or walking gait. [2]

How is Lennox-Gastaut Syndrome Treated?

Medications include many psychoactive drugs, including tranquilizers, anti-convulsants, and cannabinoids. [2] Often, seizures associated with LGS are not responsive to treatment with anti-seizure medications. [4] This means intellectual disability or worsening of other symptoms can occur over time due to repeated seizures—additional problems that can develop include autism spectrum disorders, psychosis, and hyperactivity. [4]

Surgery may also be done to help with seizures caused by LGS. Vagus nerve stimulation can help reduce partial-onset refractory seizures in those over age 12. [2] Other surgical options include focal cortical resection effective in rare cases by removing the part of the brain causing seizures [2, 5], and corpus callostomy, which splits the brain down the centre to help reduce spread of electrical activity through the brain to control some seizures—it is not a cure for seizures caused by LGS, but can be considered a palliative treatment to improve quality of life. [2]

Dietary changes can also be effective in helping to manage seizures. [2] The ketogenic diet may be more familiar to people in recent years, but it has long been used to manage epilepsy. [2] Another low-carbohydrate, lower-protein diet, the modified Atkins diet, may be used to manage seizures unresponsive to medications. [2] These diets should be used under strict supervision of a physician and dietitian.

Medical Identification for Lennox-Gastaut Syndrome

Due to frequency of seizures and potential cognitive disabilities, it is important to wear medical identification for Lennox-Gastaut Syndrome, no matter the type of seizures experienced. Even for those who are verbal, a seizure will impair the ability to communicate, and medical ID jewelry can provide information on where to find an epilepsy action plan or seizure action plan, to determine what needs to be done to assist the person experiencing a seizure, and if—or at what point—emergency medical services (911) needs to be called. Medical ID jewelry can also provide emergency contact information to ensure parents or family members are contacted if hospital care is required. Custom engraved medical ID bracelets for Lennox-Gastaut Syndrome can be personalized for the unique circumstances of each person living with this rare disorder. [4]