Alia's Story

alia the pediatric patient for CBD

When you become a parent you dream about all the wonderful things you’ll do with your child. The ponies they’ll ride. The hours you’ll spend together at the barn. Asking their pediatrician to prescribe CBD oil, isn’t one of them. My daughter Alia was diagnosed with seizures at age three. She’d been having them since she was a baby, but the presentation was so odd—just a single subtle twitch—that her doctor repeatedly dismissed my concerns. 

It wasn’t until I mentioned it to her speech therapist that the idea of neurological testing was raised. The EEG revealed that Alia was seizing frequently. The brain MRI that followed showed why—she was born with diseased tissue in her left temporal and occipital lobes. By the time we got those results, Alia’s seizures had progressed from barely noticeable twitches to falling on the ground and seizing all over. And it would happen 30 or more times a day. It was the single most awful period of my life. I can only imagine what it was like for her. 

Alia started on drug therapy immediately—and that was awful too. The first one, Trileptal, knocked her out for three plus hours every morning. She’s three. She’s supposed to be playing with ponies and running around, not comatose on her bed. Still the seizures persisted. The second drug, Keppra, turned her into a tiny Incredible Hulk. Within 15 minutes of taking her meds, she’d fly into a full blown rage that lasted all day for three weeks. Still she seized. I asked about CBD oil around this time, but her neurologist wasn’t on board. No research had yet been published on children. We tried Topiramate next and that put a stop to the seizing. It’s main side effect is word finding issues, which is obviously not ideal for a child already struggling to speak. 

Alia had brain surgery at SickKids hospital to remove the abnormal tissue when she was four. The hope with surgery is that you’ll get an 80% reduction in medication and we did. We’ve dropped two drugs but she’s still high risk, according the EEG. The next time I brought up CBD oil with her neurologist a major study on untreatable seizures in children had been published in the New England Journal of Medicine and he signed off. 

How it Helps

She’s still on Topiramate, but she seems clearer with CBD oil. Like there’s less interference running in the background. And, there are zero side effects. She says it tastes gross and that’s it. Seizures can be notoriously difficult to manage and the pharmaceutical drugs currently available feel like you’re trading one terrible outcome for another. If CBD has the potential to improve the quality of life for people like my daughter, it’s an infinitely more attractive option. Alia will be on medication for the rest of her life. With CBD, it doesn’t feel like we’re poisoning her in the process.