The Tullis family has a lot to celebrate this holiday season.
Following more than six years of Liz Tullis advocating on behalf of her son to the Texas Legislature and area medical doctors, 16-year-old Conrad has for the last several weeks been taking prescribed cannabidiol (CBD), giving him relief from debilitating seizures.
Conrad, who suffered a severe traumatic brain injury at two years old following a near-fatal drowning, has extremely limited mobility and is unable to speak. The frequent seizures he experiences as a result of the injury impact his ability to make sounds and facial expressions, which is how he communicates, Tullis said.
“Before taking CBD, Conrad would have seizures that were so bad his eyes would roll into the back of his head and continue to flutter hours after the seizing stopped,” Tullis said, noting that he would have seizures every day, and big seizures at least once a week.
“I would have to give him Valium because he was suffering so much aftershock after big seizures. But in the last month, I haven’t had to give him one. That’s huge.”
Initially, CBD prescriptions were limited by law to epilepsy patients, and even when a bill was signed to extend the list of qualifying conditions, Conrad’s diagnosis and type of seizures didn’t meet the prescribing criteria.
Dr. Carter Richards, Conrad’s neurologist with Texas Pediatric Specialties and Family Sleep Center, said a turning point for patients like Conrad was in September 2018, when the Drug Enforcement Administration issued an order listing all drugs approved by the Food and Drug Administration that contain CBD – but no more than 0.1 percent of the chief psychoactive agent in cannabis – as Schedule V drugs, those with the least potential for abuse.
“In the past, all marijuana-based substances were listed as Schedule I drugs,” those that have a high potential for abuse and the potential to create severe psychological or physical dependence, in the same category as cocaine and heroin, Richards said. “Changing the way we deal with Schedule I drugs led to the fast-tracking of several different CBD-based products.”
This includes Epidiolex, the country’s first FDA approved medication to contain CBD, which Richards now prescribes for Conrad.
“GW Pharmaceuticals produces a CBD product that is completely free of [tetrahydrocannabinol] (THC), the actual chemical that gets people high from marijuana,” Richards said. “It still has the helpful CBD that hits CBD receptors in the brain that helps with seizures” by quieting an excess of electrical and chemical signals.
Richards said that when it came to using CBD to treat patients, he was initially a “massive skeptic.”
“Most neurologists are skeptical people, and it’s largely because we deal with extremely sick patients. So, when something comes out as the next best thing, we usually approach with caution.”
What fueled interest in CBD to treat patients who have seizures wasn’t the “hype” surrounding the products, rather, it was patients who forced that hand, Richards said.
Tullis is included in that group.
“I’m just like any other mother who wants the very best for her child. If there was something that was going to give Conrad some relief, I was going to fight for it,” Tullis said.
Conrad is now one of nearly 40 children who suffer from seizures being prescribed Epidiolex by Richards and his neurology partner
“What we have found is that it is remarkably effective in a specific population of people. There aren’t any other drugs that hit that receptor chain that I am aware of,” Richards said. “When someone has failed medications for seizures, you don’t usually find something that stops them. Being able to do that for a certain set of people is remarkable.”
Since taking Epidiolex, Richards said Conrad has had a “dramatic reduction in seizures, and at least moderate improvement in stiffness and ability to move.”
Tullis said in addition to the reduction in seizures overall, “he is becoming even more aware.”
“He is making so many sounds, like he is finding his voice. He’s not saying any words, but he is being more vocal, and he gets even more engaged because he doesn’t have seizures all the time. That’s the big thing I am excited about,” Tullis said.
While Conrad has myriad medical concerns as a result of his traumatic brain injury, it hasn’t stopped him from making friends and enjoying life as a teenager.
The Rivard Report recently met up with Conrad and two friends from school, Henley Johnson and Sam Hodgson, at the Pearl, where they went to have lunch at the Bottling Department Food Hall before going to see a scary movie.
Sam said that he and Conrad met on the first day of kindergarten, and when they moved to first grade, Conrad was the only familiar face in the class.
“It has been really nice to get to know him for so long, and to be friends with someone for so long,” Sam said.
Tullis said that as Conrad has moved through grade levels, she has made sure to advocate for him to be included in regular classes in addition to those in the special education department. And it is in those regular classes where he has met some of his closest friends.
“He is really funny, and it’s always an adventure when we hang out,” said Henley, who met Conrad at Alamo Heights High School.
Tullis said her son is so close to some of his friends, that instead of driving Conrad to football games and other social outings, she started letting them drive her wheelchair-accessible van themselves
“I want Conrad to have a really full life. A lot of times parents with special needs kids feel this kind of weight of inequality, but I just try to help others be a part of his life when they show me they want to,” said Tullis.
If Conrad’s friends want to hang out without a caregiver there, they have to learn how to give him food through his feeding tube, and what they have to do if he has a seizure.
Sam said that while Conrad is a friend who he “has to take more care of,” including bringing the lunch box filled with the food and accessories, being on alert for any discomfort, or knowing how to deal with a seizure should it take place, it is “something he would do for any good friend.”
Tullis hopes that Conrad continuing to take Epidiolex will help him to have even more moments of joy than he was previously.
“I’m just trying to give him as normal a life as possible, and help him get around any limitations, just as I would for my other son,” Tullis said. “As a mom, it’s exciting to see your kid do well. It’s exciting to see Conrad have improvement after suffering for a long time and having seizures really disrupt his day.”