Finding international support for my LGS loved one

Meet Dominic

My name is Jackie and I am the proud mother of an LGS warrior, Dominic, who is 11 years old. Dominic loves swimming, Legos, Superheroes, playing soccer, and Minecraft.

Dominic experienced his first seizure when he was 3 years old. He was sick and had a fever at the time so there was initially no concern but within the next two months he would go on to have more unprovoked seizures and we were told he had epilepsy. Within a year of his first seizure, Dominic was diagnosed with Doose syndrome and his seizures continued to progress and worsen. Out of desperation and exhaustion, we sought out ways to keep him safe and we learned about the Sami monitor. We ordered the camera right away as we already had an old iPad we could use with it and it truly gave us back some peace of mind. It wasn’t until we got the Sami monitor that we realized our son was having nocturnal seizures almost every night. We were able to send the videos to his neurology team and it helped with his treatment plan. He was then admitted for a video EEG, we received the diagnosis of Lennox-Gastaut Sydrome.

It has been almost eight years into Dominic’s epilepsy journey and he has been through more than most adults experience in their lifetime. He has had too many hospital admissions to count, failed multiple anti-seizure medications, had the vagal nerve- stimulator (VNS) surgery twice, was on the medical ketogenic diet for three years, trialed CBD oil and almost a year ago had deep brain stimulator (DBS) surgery. Dominic continues to have multiple seizure types, every day.

We learned of the Elevate Patient Assistance program through a parent of another LGS warrior. We reached out to them as the iPad we were using for our Sami monitor was becoming faulty, sometimes just turning off completely and we were thrilled to learn they could help us replace it. The application and communication process were smooth and we received it quickly as well. It may seem like such a simple thing but having this iPad is truly lifesaving for us and we received it during a difficult time in our life.

As we live in Canada, we are unable to access some of the services but even being a part of the Facebook group and having access to monthly support meetings has helped us so much to connect and have a support network as we navigate the progression of Dominic’s LGS. We know this journey can be stressful, devastating and feel isolating at times. My advice to newly diagnosed parents is to document/record video as much as you can and never stop advocating for your LGS warrior. Remember to embrace the good days, as they outweigh the bad days.

There is so much still unknown about LGS and although we have been on this journey for eight years, we still do not have an explanation why Dominic has it. We hope that by the time our children become adults, that we have an answer so they can have genetic counselling if they choose, and we are hopeful that Dominic’s new DBS will continue to help reduce his daily seizures so that one day we can reduce the amount on medication he has to take. We are thankful for the LGS foundation and all they do for all those battling Lennox-Gastaut syndrome.

Written and submitted by Jackie, Dominic’s mom