TORRINGTON – In April 2017, Holly Sanchez got a call no parent wants to receive.
When she answered, the voice on the other end was from Lincoln Elementary School. Her son, Xavier, had some sort of weird accident, it said. The second-grader had gotten hit in the head and was suffering from a concussion.
Bumps, bruises and sometimes even concussions are a part of being a kid – but whatever that weird accident was, it happened again less than a month later. This time, there was no talk of concussions.
“The nurse talked to me about seizures, but we weren’t getting enough information from the school about what was happening,” Sanchez said. “We weren’t sure. Finally, he had an episode in June and another episode in July. His dad actually saw the episode and was able to tell the doctor a little bit more.”
His father’s descriptions were enough to make the doctors administer tests for epilepsy, and they didn’t have to wait long for the answer. The answer became apparent during a standard electroencephalogram test, which monitors the brain’s electrical activity.
“At that time, we were taken to Rocky Mountain Hospital and we were there towards the end of July,” Sanchez said. “He had his first EEG in August. He had three seizures just in that EEG.”
Epilepsy was the verdict – and as long as it took to get that diagnosis, it took even longer to figure out how to manage it.
The standard protocol for epilepsy treatment is to jump right into pharmaceuticals, according to the Mayo Clinic. Most people with epilepsy can become seizure-free by taking one medication – but Xavier wasn’t so lucky.
The first drug the doctors tried was Keppra. It slowed the seizures, Sanchez said, but the drug comes with a laundry list of side effects.
Within days of starting the medication, she saw changes in her son that could have only come about as a side effect to the medicine. Keppra can make some users exhibit depression and suicidal thoughts – and then eight-year-old Xavier was no exception.
“We saw that within three days of him being on that medication,” Sanchez said. “Within a week to two weeks, he was saying that he did want to live anymore, he didn’t want to wake up, he couldn’t live like this. Could you imagine your eight-year-old telling you that?”
Sanchez didn’t have to imagine it. She scheduled another appointment with Xavier’s neurologist at Rocky Mountain, who prescribed another medication. One of the side effects of this medication is increased seizures – and around that time, Sanchez decided to look into a different route.
“He had seizures every single week, where he was having them monthly,” Sanchez said. “They just kept upping that until we maxed out on that. That’s when we decided that we needed to switch doctors.”
The final straw, though, was when Sanchez asked about a new treatment, proven to help epileptics – CBD oil.
CBD oil is a by-product of cannabis sativa. There are two cannabis cultivars – hemp, which is used for CBD oil, other health supplements and has around 25,000 uses, according to its proponents. The other cultivar, marijuana, has a psychoactive component known as THC and could land someone in prison under Wyoming’s draconian
Sanchez first heard of CBD from a friend in Colorado who has a daughter with epilepsy. CBD gained national attention when a video of someone treating a seizure with CBD oil went viral, and now a quick search on YouTube returns dozens of similar videos from all over the globe.
Sanchez was all in to try it. The neurologist wasn’t.
“He wasn’t listening to us,” Sanchez said. “He wasn’t listening to the things that I felt we needed. We are trying to learn so it’s kind of expecting the doctor to help us. He didn’t really say what he had against the CBD treatment.”
Sanchez took Xavier to an epilepsy specialist at Children’s Hospital of Colorado. This one was far more reasonable.
“When we mentioned CBD to her, she said that was kind of a last resort,” Sanchez said. “However, I already knew that this neurologist was okay with the CBD use because I have a friend in Colorado that has the same neurologist. I already knew that it was going to be an option, we just had to have the right time to say that this is what we want.”
A friend got Sanchez in touch with Realm of Caring, a non-profit that works with hospitals, doctors and researchers to stay at the forefront of cannabis science, according to the group’s website. Realm of Caring provided information about dosing and potential side effects of CBD, and even set the Sanchez’s up with Charlotte’s Web, one of the top CBD producers in the country.
“They answered any questions that I had,” Sanchez said. “They didn’t make you feel different. A neurologist gives the okay, but we were on our own trying to figure it out.”
The difference was almost immediate for Xavier. Six months after starting a CBD regimen alongside his medications, the seizures had stopped. Sanchez, working closely with the epilepsy expert, began to wean her son off of the medications.
Then Xavier had a grand mal seizure.
“It’s better than meds”
A grand mal seizure is caused by abnormal electrical activity throughout the brain, according to the Mayo Clinic. During a grand mal, the patient can lose consciousness, and muscles contract and cause the person to collapse. That is followed by rhythmic contractions and convulsions.
In some cases, grand mal seizures can have lasting effects.
Luckily, Xavier was able to bounce back. The grand mal was likely cause by the shock to his body being off drugs after taking such a strong does for so long, Sanchez surmised. But, she said, Xavier was able to successfully lower his doses thanks to CBD.
“We are able to be on the lower dose of medicine with this,” she said. “He doesn’t feel like a zombie. I think that grand mal was just a shock to his body. I don’t know what would’ve happened if we would have continued with just the CBD.”
Xavier’s progress with the CBD regimen has made Sanchez a true believer in the supplement.
“Anytime people have something, I tell them they have to try CBD,” she said. “Just try it.
“I get that it doesn’t work for everybody, and it doesn’t work for everyone with epilepsy and it might not work without the meds for him, but I still believe in it 100%. I was still trying to get people to use it over pharmaceuticals in any day.”
Sanchez said the CBD she gives Xavier is THC free, though there is an emergency medication on the market that does contain THC. The current protocol, if Xavier were to suffer another severe, seizure is complicated – but it doesn’t have to be.
“If you have a seizure that lasts for five minutes, they give you a rescue med,” Sanchez said. “You have to call the ambulance coming up to monitor their breathing. Thankfully, we’ve never had to use it. But the one with THC, you just have to squirt some in each nostril. It works within seconds.”
Unfortunately, that medication is illegal under Wyoming law.
Xavier – now 10 - is a shining example of what CBD can do. According to Sanchez, he hasn’t exhibited any side effects on CBD, except for an increased appetite and a more relaxed mood – which is essential, because stress triggers seizures.
“Just educate yourself,” Sanchez said. “It’s not anything bad. It’s going to help you. There might be some side effects, but they’re fewer then your pain. Just look into it and educate yourselves. Don’t judge people for using it.”
Xavier, or course, is also a fan.
“It’s better than meds,” he said.