My daughter Amanda started having seizures when she was two years old.
After many hospitalizations and failing 12 medications, she was diagnosed with LGS, and our quest to find a treatment that worked for her began.
Amanda’s seizures always came in clusters and our family traveled out of state to seek treatment, this affected our family because of the prolonged hospital stays.
Amanda missed 3 years of school because of her seizures and had a lot of struggles over the years with learning simple tasks and concentration.
What has helped Amanda is having a VNS implant for the past 6 years. Currently, she is two years seizure-free and improving every day in her education.
My advice to other parents with loved ones with LGS is to keep doing research and attend as many conferences about LGS and ask questions because it took a long time for us to get a diagnosis for our daughter. My hope is that one day we find better treatments for our children.
-Written and submitted by: Amanda’s Father, Jose
Updated 11/15/24 (KK)