About LGS Treatments Kit

About this Kit

Your Guide to “What’s Next” in LGS Care

This kit is designed to support families exploring treatment options for Lennox-Gastaut Syndrome (LGS). It brings together the latest information on medications, diets, devices, surgeries, clinical trials, and tips for working with your healthcare team.

In This Kit You Will Find

• Anti-Seizure Medications
• Seizure Emergencies & Rescue Medications
• Clinical Trials
• Diet Therapies
• Neuromodulation
• Epilepsy Surgeries
• Complementary & Alternative Therapies
• Genetics and LGS
• Doctor Visit Tools

Because this kit is comprehensive, it may feel like a lot at once. Take your time, revisit sections as needed, and remember — you are not alone. We’re here for you.

Contact Us

FamilySupport@LGSFoundation.org | (718) 374-3800

www.LGSFoundation.org

Introduction & How to Use This Kit

Dear Friends,

In 1995, our daughter, Savannah, had her first seizure. She was 2. As with all who have LGS, it wasn't present when her seizures started. It evolved over time as her uncontrolled seizures interfered with the finely orchestrated process of early life brain development. By age 5, the hallmark EEG features of LGS were present, and Savannah was officially diagnosed with LGS.

Back then, there was no LGS Foundation. We had to check out internet time at the library and tried to learn all we could from a hodgepodge of information and old books. We didn't meet another family living with LGS until years into our diagnosis. And finding information to guide our journey was nearly impossible.

Fortunately, today there is a thriving LGS Foundation. LGS is tough. We live it. But finding information doesn't need to be tough, so the LGS Foundation does everything it can to bring information about LGS to families living with the condition.

This About LGS Treatments Kit is the first of its kind and is designed to share information about available treatments for seizures in LGS. There is a lot of info in this kit! As you navigate it, remember to take your time and pace yourself. You don't have to read it all in one day. And remember that you are not alone. The LGS Foundation and our community of support are here to help you. While there is no one precise treatment that works for most with LGS, there are many options available to try. We hope you find this guide useful as you seek treatments for seizures for your loved one with LGS.

Most with LGS try treatment after treatment, always searching for anything to relieve seizures. Our journey was the same. By the time Savannah was 18, she had tried and failed 26 treatments for LGS, including medications, diets, epilepsy surgery, and alternative therapies. Despite aggressive treatment, she continued to seize every day and would go into status epilepticus weekly. If you had told us that treatment #27 would help our daughter, I would not have believed you. And yet, giving up was not an option. Incredibly, it was treatment #27 that changed our lives. Savannah's seizures dropped by 95%, and I feel like I met Savannah for the first time when the seizure haze lifted.

We sincerely hope you will find your optimal treatment for LGS quickly and not suffer a neverending cycle of treatments. We hope this kit will help.

I am so happy to be with you.

Never lose hope,

Tracy Dixon-Salazar, PhD

Executive Director, LGS Foundation

Savannah's Mom

March 2023

LGS is tough. Finding information doesn't need to be.