Lennox-Gastaut Syndrome (LGS) is a rare and severe form of epilepsy that typically begins in early childhood, usually between the ages of 3 and 5. It is characterized by multiple types of seizures, which are often difficult to control, and by intellectual disability or developmental delays. The seizures associated with LGS can include tonic (stiffening) seizures, atonic (drop) seizures, and atypical absence seizures.

There is no cure for LGS. Current treatments can help reduce seizures, but they won’t stop them completely. These treatments mainly include anti-seizure medications and some surgical options.

While these treatments can decrease the frequency of seizures, they also come with risks. Most people with LGS need to take several different anti-seizure medications, which can cause significant side effects. Surgeries also carry risks and can be particularly stressful for families.

Right now, there’s no clear guidance for parents and doctors on whether adding more medications or opting for surgery is the better choice for a child with LGS. It’s also unclear which approach might better support a child’s development and daily functioning.

A research study funded by the Patient-Centered Outcomes Research Institute (PCORI) is looking at how different treatments affect children and teens with Lennox-Gastaut Syndrome (LGS). The study will focus on how these treatments impact areas like communication, behavior, and overall quality of life. The research team is asking caregivers to share their experiences and thoughts on caring for someone with LGS.

The information collected will be published, but personal details will remain private. Participation is completely voluntary.

Who: Caregivers of children and young adults (up to age 26) with Lennox-Gastaut Syndrome
What’s involved: Participants will complete a series of surveys that ask about behavior, communication, and quality of life. There may also be follow-up questions about the child’s history with LGS, recent seizures, and medications. Surveys can be filled out whenever and wherever is convenient. As a thank you, families will receive a gift card for participating.

Study Title: Comparing Surgery and Medication Treatments for Lennox-Gastaut Syndrome

Lead Researcher: Dr. Sandi Lam

Study ID: Lurie Children’s IRB #2022-5454

• The Surgery or Meds LGS Study
• Contact the study team