Ernest seemed healthy in nearly every way after he was born. Mild asthma that would act up in the wintertime, and a febrile seizure when he had the flu as a toddler. We were told it’s common in that age with fevers, and likely wouldn’t be something we would have to worry about in the future.
Around the age of six, he started having what we would call “eye flutters”. Quick fluttering of the eyelids for a few seconds, didn’t seem to be disruptive to him at the time. Our family doctor took a look at them and decided he was having tics. She said that the tics would likely lessen over time as he got older. However, around age eight his behaviours started to change. He was more aggressive, quick to anger, and emotional. He had trouble focusing and staying in school. Kids were bullying him during this time because of his “tics” which wasn’t helping things. The doctor suggested possible ADHD and referred us to a pediatrician. The next doctor took one look and said we needed an EEG before we moved any further.
Those results changed the trajectory of our lives.
He had over twenty short seizures in thirty minutes.
It was confirmed. Epilepsy. But just like most people who aren’t knowledgeable about epilepsy, we didn’t realize the scope of it or what that meant. After another year of testing between five-hour video EEGs, MRIs, and genetic testing, we learned that not only did he have epilepsy but he had a rare kind called Jeavons Syndrome. He would never outgrow it. He will be on medications for the rest of his life. He will never be seizure-free.
It was devastating trying to explain to an eight-year-old that he would never be able to drive a car.
But this is where our story started looking up. We had a name now. We googled and researched (because neurologists and other doctors provide a diagnosis and prescription, not much else). We learned about the types of seizures he was having because, in the beginning, I didn’t even know there were multiple types. We learned that my son also has Autism (and part of it was ADHD). We learned that I have a genetic condition through his genetic testing. Everything started making sense. And with names of things we can plan our care around them.
When he started his medication, it was a bit of trial and error. We knew it would only lessen his seizures, never fully be rid of them. He was home-schooled for a few years to help with the transitions. Now he’s back in Grade 8, and doing well!
We found support in the community (Epilepsy South Central Ontario being one of them!). Ernest took a role in explaining epilepsy to his friends and family, educating them because just like us in the beginning, they don’t know! It is still difficult to deal with the stressors of this disease. It is a family illness, which is one reason it’s so important for us all to share our stories. Our epilepsy warriors are some of the strongest people I know, and it’s amazing watching them grow and become such compassionate and empathetic people because they know what kind of hands life can deal you.
We built a community. I think that’s an amazing thing.
Jessica Hart (Ernest’s mom)
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