When Liam was around 9 months old, he started having seizures. They were myoclonic seizures, small jerks of his arms and neck that each lasted a fraction of a second. He was diagnosed with epilepsy shortly before his first birthday after an EEG showed near-constant seizure activity. The first two medications didn’t help much.
Two months after his diagnosis, he had his first tonic-clonic seizure. It was genuinely the most terrifying experience of my life to see my little boy convulsing. We tried another medication, which finally gave Liam a little relief. He went from hundreds or even thousands of myoclonics daily to a few dozen or maybe one hundred.
Sadly, this didn’t last and Liam had a tonic clonic seizure lasting almost an hour at 18 months old. The seizure was so long and severe that it damaged his brain. He had been starting to say a few words, but that was all gone. He had to relearn walking. We were heartbroken. His seizures continued to worsen. By his second birthday, he had experienced 7 tonic-clonic seizures and regressed significantly. He had also begun to have absence seizures daily. He received an autism diagnosis, which helped us access some early intervention services.
We were desperate for a treatment that would ease Liam’s seizures. We had now tried 4 medications and he was still having hundreds of myoclonics and dozens of absences daily, with tonic-clonics weekly. So, we started him on medical Cannabidiol. It was a bit of a battle, but it ended up getting him a diagnosis of Dravet Syndrome, a rare and severe form of epilepsy usually caused by specific gene changes. By his 30-month milestone, he had finally taken his first dose.
We saw a huge change within days of starting. His myoclonic seizures became much milder and their frequency was a tenth of what it had been. His absence seizures got shorter and happened less than half as often. His tonic-clonics went from daily or weekly to having one or two months in between. It truly felt like a miracle.
With the massive decrease in seizures, we started to see Liam again. He was less cranky and more interactive, and his aggressive behavior improved. Best of all though, we saw him smile again. We were also able to focus more on his sister, who is 3 years older. Liam started to talk when he was almost 3 years old.
Liam is 7 years old now. He still has seizures. Absence seizures are multi-daily, and tonic-clonic seizures are, on average, every 2-8 weeks. Myoclonic seizures are more rare, usually only happening when he’s ill. He also has focal seizures a few times per month. He has ADHD and Autism and has significant behavioral struggles. His speech is still quite delayed.
Despite these struggles, he’s a super sweet kid. He handles EEGs and hospital stays like a champ and doesn’t let seizures get him down. He loves his big sister and his school staff. He makes progress every day. But there’s always worry in the back of my mind as his dad. A seizure could happen at any moment. I have to accept that until there’s a cure, epilepsy is lifelong. A cure would mean that I wouldn’t have to explain to my son’s sister that she could wake up one morning and he would be gone.