Morgantown family advocates for teen’s epilepsy cure

CLARKSBURG, W.Va. (WBOY) — After years of trial and error, 17-year-old Reagan Nichols has found some relief from her seizures with CBD products, and her family is hopeful that medical cannabis could be another successful treatment option once she turns 18.

In September 2014, nine-year-old Reagan fell off the monkey bars on the playground at school. Her mom, Amber Nichols, was a teacher at the school.

“I was preparing my Mama heart as I was walking out. Okay, we have a broken arm. It’s going to make dance a little difficult, but we can handle it,” Nichols remembered, “And then she was in a full-blown grand mal [seizure].”

According to the CDC, a grand mal seizure can make a person cry out, lose consciousness, fall to the ground and have muscle jerks or spasms. Nichols said she had never seen a seizure before, and she said it was the scariest thing, that she thought her child was dying, but luckily, the school nurse identified what it was right away—Reagan had epilepsy.

“It was like a light switch. It literally went from no seizures to hundreds a day,” Nichols recalled.

Reagan went to Ruby Memorial Hospital, where she was diagnosed and prescribed her first anti-epileptic drug. Most epileptic patients do well on the first drug, but Reagan was severely allergic to it.

“She actually had Stevens-Johnson Syndrome,” Nichols said, “Basically, her skin was burning from that epileptic drug, so we went back to the drawing board.”

Nichols said Reagan has tried 13 anti-epileptic drugs and she’s failed them all, meaning that she reached her blood saturation of that drug and continues to seize. The family moved on to trying two medications or more at one time.

“Watching your child not only suffer from seizures but then be medicated to the point where she’s not able to walk is a completely different story,” Nichols said, “Knowing that you are giving her medication that’s causing her quality of life to deteriorate is difficult.”

At 17 years old, Reagan’s seizures are now down to twice a week. The Nichols family credits the reduced number of seizures to a VNS placement, plasmapheresis, and a new CBD product on the market called Epidiolex, which is the first cannabinoid to be FDA approved for epilepsy. Amber Nichols said throughout this journey, she didn’t expect was to have to advocate strongly to get to try treatments her daughter needs.

“We’ve had to be very pushy in trying anything we could,” Nichols said, “I’d been researching Epidiolex when it was in its trial phase, and really hoping that something could be this magic cure for her. We haven’t found it yet, but we found things that have helped, and Epidiolex was definitely one of those things.”

Now, the family is planning ahead with doctors for when Reagan turns 18. The next thing they want to try: medical cannabis.

The State of Medical Cannabis in WV

Reagan’s diagnosis is one of the few serious medical conditions a patient must have in order to receive a medical cannabis card.

As of the end of April, the Office of Medical Cannabis has approved more than 7,000 applications for medical cannabis cards, and it is still accepting applications for patients who are chronically ill. In order for a West Virginia resident to qualify for a medical cannabis card, a patient must have one of the following serious medical conditions:

Medical cannabis was unavailable for patients in West Virginia until recently; all the infrastructure is brand new. As part of the law, all products must be grown and processed in-state. The first dispensary for residents to receive the medication opened last November, and the Mountain State already has 25 operational dispensaries, four processors and eight growers.

Trulieve, a medical cannabis dispensary, was first in line to plant seeds in July 2021. A year later, they said they have six stores and over 10,000 patients across the state. By the end of the year, they will have nine stores.

“The fact that [the number of patients] continues to grow, I think is just a testimony to what we’ve been able to do and the relationship we’re building with the people of West Virginia,” Heather Peairs, West Virginia Area Manager at Trulieve, said.

Growing medical cannabis has more regulations than hemp farming. All plants have to be grown indoors, to ensure security and better control over the growing environment. Pesticides and fertilizers are regulated by the West Virginia Office of Medical Cannabis (OMC). All materials have to go through more than 30 laboratory tests before they make it to market, according to the office.

Requiring the medication to be grown and processed in-state leads to jobs across the state. More than 300 jobs have been created as a result of the medical cannabis industry in West Virginia, as well as an additional 1,884 positions in the fields of commercial construction, security services, and transportation, according to OMC.

“We get folks calling in all the time that say these products have changed their lives,” said Jason Frame, Director at the Office of Medical Cannabis, “We’re already at a pretty quick turnaround time, usually about a week to get folks a card, but anything we can do to help somebody with a serious condition, we definitely try to do here at the office.”

Peairs said that the reaction she got from people who used their products turned her business decision with Trulieve into a passion. She said she’s heard countless stories, not just from people who were using medical cannabis, but from their family members who were able to see their loved ones function without pain or reduce their nausea so that they are able to eat again.

“When we opened the first store in November, I had people crying, and I thought we did something wrong. I was like, oh my gosh, what did we do?” Peairs said, “And it was just people that were so excited to finally find the relief they’ve been waiting for.”

Stigma

Even with the positive reactions, Peairs said there’s still a stigma across the state that Trulieve attempts to fight with education. Nichols said she has even seen the stigma for the CBD medication.

“Reagan is often drug tested if we’re in the ER because she’s above the age that they start drug testing, but she came back with the CBD and Benzodiazepine. I mean, it was pretty heavy, but they only want to ask us about the CBD, and like, you don’t want to ask us about the Benzodiazepine that she’s on when we’re not allowed to wean it on our own because it’s that powerful?” Nichols said, “She’s on a drug that’s so powerful that if we wanted to take her off of it, she’d have to be admitted. You don’t want to talk about that drug, but we’ll talk about the CBD that she’s on. It doesn’t make sense.”

Peairs said the dispensaries hold events for the public, whether it’s someone who is interested in using medical cannabis or someone who is just curious, to let people know the facts about cannabis.

“I think the more we educate, not just in West Virginia, but all over, the less that stigma will be around,” Peairs said.

Frame agreed, saying that hopefully as more facilities open across the state, the stigma will minimize.

“People will see that it’s well-ran, producing safe products, and they’re being used for specific reasons,” Frame said.

Epilepsy Awareness

The Nichols family not only advocates for Reagan, but the Epilepsy Foundation and the epilepsy community. Amber Nichols said the biggest advice she would give to parents is to not let the diagnosis limit what their child can do. Reagan has been able to participate in dance and pageants despite having epilepsy, and she dreams of becoming a teacher one day. Amber said if Reagan wants to do it, they’ll figure it out.

“I remember there was a time when I would make decisions on where we would go based on, well, I think she’s going to seize at this time in the early years of epilepsy,” Nichols said, “Now I like to say, what’s the difference? If we’re out and about and she has a seizure, I know what to do. If we’re here at home, and she has a seizure, I know what to do. So don’t change your schedule. Live life. You’re going to regret that in the long run.”

And even if medical cannabis isn’t Reagan’s cure, Nichols said they won’t stop trying new things until she’s seizure-free.

“There’s nothing we would not do. We would move heaven and earth to get Reagan healthy. We’ve taken second jobs. We’ve taken her across the country,” Nichols said, “I mean, we’ve done literally everything we can as parents for her. That’s our job. That’s what we’re supposed to do.”