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Tracie Thomas spent a decade exhausting every option in her fight to get her son seizure-free. It wasn’t until she stumbled upon a story about the positive impact cannabis had on epilepsy that she finally found a glimmer of hope.This video was produced in collaboration with NOVA and is made possible in part by the Corporation for Public Broadcasting, a private corporation funded by the American people.

Over 50 million people worldwide live with epilepsy.

Over 50 million people worldwide live with epilepsy.

At 3, Caleb Thomas came down with a fever that appeared to be normal for his age group. However, the family soon ended up in the hospital searching for answers. After having as many as 100 seizures per day while hospitalized, it was determined that Caleb was suffering from epilepsy. At that point, Caleb’s mom, Tracie, began her journey to get him seizure-free.

Tracie Thomas spent a decade in her fight to get her son seizure-free.

A Story of Patients

Story of Patients

Body & Brain

A Story of PatientsPublished: May 5, 2021Tracie Thomas: I got a call from Caleb’s daycare that he had a fever. It didn’t seem like a big deal until he had that first seizure, and then we ended up in the hospital. And that began our journey to get Caleb seizure freeDr Nassim Zecavati: Over 50 million people worldwide live with epilepsy. All genders are affected. All ages are affected. Epilepsy can be caused as the result of brain infections, traumatic brain injury, a stroke, underlying genetic conditions, brain tumors, and then of course, any neonatal condition affecting the growth of a baby’s brain can result in epilepsy, as well.Tracie Thomas: Over time, Caleb’s been through 26 medications, failed them all.Dr Nassim Zecavati: We know that 70% of patients with epilepsy respond to the first seizure medication. So then for the 30% that doesn’t respond, a second seizure medicine is typically trialed and then after a patient fails two seizures medications, they’re considered medically refractory, meaning that their seizures are resistant to medications.Tracie Thomas: Caleb, do you hear mommy? Breathe for me, take a big breathCaleb: Mommy takes care of me because at nighttime, sometimes I do have seizures. &amp; then she will come straight into my room &amp; then give me some medicine. She loves me a lot and I love her.Tracie Thomas: I stumbled across a story about a little girl that had had seizures &amp; they had used cannabis oil. It wasn't really an option because it wasn’t legal. I talked to the Epilepsy Foundation and asked if they knew of any place we could get into any studies, and that’s how we met Dr. Lyons.Dr Lyons: Three mothers in one week with children with severe childhood epilepsy came to me in one week, and asked me what I knew about medical cannabis. &amp; when I went back to look at basic research, its efficacy was identical, if not superior than what we have on the market. And I knew that, if at all possible, I had to get it for these children.Narration: Dr. Lyons enrolled several patients in clinical trials for Epidiolex — a pharmaceutical grade cannabidiol — or CBDUnlike THC, the main psychoactive ingredient in marijuana, CBD is not intoxicatingDr Lyons: In the double blinded placebo and expanded access studies, more than 50% of the patients had a meaningful reduction in the seizure types we measured, and that response was sustained for more than a year.Dr Zecavati: What seizure drugs including cannabidiols broadly do is they reduce the hyperexcitability that is a result of the cannabis-binding multiple receptors in the brain and in the nervous system.Dr Lyons: Anecdotally in our clinical studies, we found not only was there an improvement in seizure control, but we actually saw some very compelling improvements in functional status.Tracie Thomas: Caleb started to have more energy. He was able to get out of the wheelchair that he had used for years. Just happier, more present, more social and cognitively he was a lot better.Narration: Caleb’s outcome represented some of the most positive findings from all of Dr; Lyons’ clinical trialsHowever, other patients didn’t have the same results. And there were side effectsDr Lyons: One of the challenges with CBD used more broadly across the country, is that CBD can affect liver function negatively, and actually there are case reports of untoward effect of drug interactions of CBD products on other medications, including those that are critical to the prevention of stroke and heart attack. As a larger society and country, those are some of the challenges that we now face to keep people safe as we avail ourselves to some of the benefits of cannabis and hemp.Tracie Thomas: The next journey is to get Caleb a medical marijuana card in the state of Virginia. Having the best quality of life with the least side effects has definitely always been my goal. But I feel like we are starting over now because now I have to get a doctor that’s going to give us a medical card. There is still a lot of stigma with medical marijuana. The fact that it’s still a schedule one at the federal level makes it tough for doctors, makes it tough for employers, and makes it tough for people that really need access to it. And my son is one of those.

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A Story of Patients

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Support Provided By

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