Cannabis Patient Care - August 2021

CannabisPatientCareAugustIssue2021

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13 cannapatientcare.com august 2021 | cannabis patient care caregiver focus Treatment options are usually a combination of drugs that a team of doctors help patients determine. Today, cannabidi- ol (CBD) and an FDA-approved purified, oral solution form of CBD called Epidiolex are included as treatment options, but when Charlotte was first diagnosed those treatments were not available. "She was on as many as 17 different pharmaceuticals over time, never about more than five at any given time, but Dravet syndrome and the type of epilepsy that she had was known as intractable epilepsy," said Matt. "No matter what neurologi- cal epileptologist we spoke with, we really never found any ef- ficacious treatment via pharmaceuticals for controlling her epilepsy. At the age of five is when it was getting really bad, and she was having as many as 300 grand mal seizures or ton- ic-clonic seizures a week." Basically, Charlotte was having a seizure every 15 to 20 minutes. Matt also explained that there's usually a certain amount of time that any person would have to go through to recover fully from a seizure, but with so many seizures taking place it left Charlotte in a vegetative state. They had to put in a G-tube—a stomach feeding tube to make sure she was get- ting the nutrients she needed. She was confined to a wheel- chair and she couldn't talk. At that point, there were no oth- er good options to help Charlotte so Matt and Paige knew they needed to find another solution to help their daughter. The Road to CBD and Charlotte's Web Matt was working in Afghanistan at the time—usually doing several months overseas and several months back home— where he was using his former military skills as a Green Beret to help train soldiers to track terrorism using software. This allowed him to work a few months at a time at a high paying job to help offset Charlotte's medical expenses and still have big blocks of time to spend with his family at home. Matt explained that any down time he had in Afghanistan was spent Googling and searching for alternative solutions to Charlotte's condition. It was during one of these searches, that he came across the story of Jason David in California who was using large amounts of CBD to treat his son Jayden's Dravet syndrome (3). David's story showed success with CBD for con- trolling his son's epilepsy. "I immediately got on a satellite phone and I called home to Paige," Matt explained. "I said, 'Paige, I have no idea how you're going to pull this off, but we have got to tr y CBD. We've got to tr y cannabidiol to give Charlotte another chance.' And so, we did that." Of course, back in 2012 it was no easy feat to get medical CBD in general, but especially for a child. "Back at that time, Char- lotte being five years old, she would have literally been the youngest medical cannabis patient in Colorado," said Matt. "Given the fact that this was a child, you had to have not one, but two doctors sign off on promoting that this is a good idea." This presented a challenge for the Figi's to proceed, but through Paige's persistence she was able to find those two doctors: Dr. Margaret Gedde and Dr. Alan Shackelford. In an ar ticle with CNN (1), both doctors explained that Charlotte and her family had exhausted all other treatment options and therefore they felt the potential benefits of CBD out- weighed any possible risks. Initially, the Figi's good friends Mike and Candy Jackson were able to help them tr y CBD. "Mike Jackson drove up to Denver from Colorado Springs and he sourced out a par ticu- lar strain of cannabis that had high amounts of CBD," said Matt. "He came home with it and our friend helped make it into a tincture that we gave to Charlotte. She went seven days seizure free for the first time in longer than I could pos- sibly remember." The family knew that they were on to something amazing for Charlotte. They decided to put more time and research into finding a product that was safe, laborator y tested, and Charlotte Figi during Easter 2018. Photo courtesy of Candy Jackson.

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