Cash’s LGS Journey

Celebrating 100 Days of Seizure Freedom

Cash is the youngest of our three boys. He is the light of our lives and here to teach lessons to all of us. 

Cash started having seizures when he was 3 weeks old. These were easily controlled with medications. Then, shortly after Cash’s first birthday, the seizures returned! By the time Cash was 18 months old we were hospitalized and diagnosed with Infantile Spasms. The spasms were relentless. The medications were not providing any seizure relief and were causing additional side effects. Cash’s seizures continued to change. He developed silent aspiration and was diagnosed with Lennox-Gastaut Syndrome.

Over the years we have tried and failed over sixteen medications/diets. Then we finally found seizure control. As a nurse for over 13 years, I feel that my experience has played a vital role in advocating for my son at times. We really have a conservative plan for the amount of medication we want Cash on and a low tolerance for side effects that affect his quality of life. We’ve also been so fortunate to have a child that is so good-natured and tolerant of everything that Cash had to endure, which has been a lot over his 5 years of life.

Cash has a drive that is unstoppable, especially when it comes to his therapies (PT/OT/Speech). And as soon as we gained control of his seizures he started excelling in ways that we never thought possible. My hope for Cash is that he reaches his fullest potential and maintains it as much as possible. But more than anything I hope for acceptance and awareness of LGS. 

My advice for other LGS caregivers is to make the most of every moment, hang on to the good times to help get you through the hard times, and NEVER LOSE HOPE!

-Savannah, Cash’s Mom