Bob and Pam’s daughter Jessica began having seizures on her second day of life. Over the years that followed, she continued to experience seizures and developmental delays, but her doctors were unable to provide a definitive diagnosis. Her family finally received answers when, at age six, she was diagnosed with Lennox-Gastaut syndrome (LGS), a rare form of epilepsy.
Nearly 3 million Americans are living with epilepsy, a neurological disorder characterized by seizures. LGS, one of the more severe forms of childhood epilepsy, is characterized by multiple seizure types and cognitive impairment. The first signs often occur between the second and sixth year of life. LGS accounts for up to 4 percent of all childhood epilepsy cases.
Throughout Jessica’s childhood and adolescence, her family struggled to find her the right neurologist and the right treatment for her. After a long trial and error process, Jessica started on a treatment regimen that included BANZEL® (rufinamide), a prescription medication used in combination with other anti-epilepsy medications to treat seizures associated with LGS. The new regimen helped Jessica gain better seizure control on a day-to-day basis. Patients with a history of Familial Short QT syndrome should not be treated with BANZEL.
As a child with LGS grows into adolescence and then adulthood, he or she might experience unique challenges and changes for which his or her caregiver should be prepared. Taking steps early on to plan for a loved one’s future can give you comfort knowing he or she will be well cared for later on.
Today, at age 35, Jessica is doing well in a residential facility. Looking back, Bob recognizes how critical it was to start planning early. “It’s important for families coping with LGS to take living arrangements into account when making their financial plans for the future,” he says. “We recognized Jessica might be better off living in a residential facility one day, and factored that in when making financial decisions.”
There are several different options for continued care living situations for adults with LGS, including independent living (whether alone or with roommates), residential facilities like the one Jessica lives in, living with family or even adult foster care. It’s important to think about the options available and consider what might be best for your loved one, then plan accordingly.
Many parents of adults living with LGS struggle to find ways to keep their child in a structured environment once they finish school. For some people with LGS, pursuing employment may be appropriate, and opportunities for people with such disabilities do exist. Each state has different vocational rehabilitation services, and most provide some form of employment counseling as well as help finding a job. Another option is searching for a supported employment opportunity where the work environment is tailored to an individual’s specific pace.
For those living with LGS who aren’t able to work, public and private day programs offer structure throughout the day and the opportunity to interact with others. As part of Jessica’s program, she engages in daily activities with other adults and goes to the gym with her trainer. She loves to go shopping, visit pet stores to see the animals, and — her favorite — get manicures with her mom.
After more than 35 years as a caregiver, Bob knows what a challenge LGS can be for families. Having navigated his daughter’s transition to adulthood, he advises planning ahead and exploring all of the potential options available to help your loved one live a full and engaging life. Above all, Bob urges, “If you’re caring for a child with LGS, don’t give up. LGS can be a long road and you don’t have to be alone on the journey.”