For Vicki Lynn, enjoying a rock concert with her adult daughter Aubrie is a precious experience — because it’s something she never thought they would be able to do together.
Less than three years ago, Vicki’s daughter was experiencing seizures so severe that not even conventional medicine could control them. “Aubrie danced with death once a month, and many times I thought I would lose her,” Vicki recalls.
So, in a last-chance bid to stop those debilitating fits, doctors made the controversial decision to remove part of Aubrie’s brain. However, it wasn’t until Aubrie began experimenting with cannabis that she finally exhibited signs of improvement.
“I always hoped she would have a better quality of life, and now, thanks to cannabis, my dreams for her are a reality. I never did lose hope.”
Vicki, who works as a recruitment consultant for Greenhealth Recruiting, recalls the time before her daughter’s first seizure, when they lived in Alabama: “Aubrie was on track to have a normal life. She was in ballet, in kindergarten showing quiet intelligence.”
Now aged 54, Vicki, can still clearly remember staring helplessly at her then-five-year-old daughter’s little body, feeling complete despair as she suffered her first tonic-clonic seizure, also known as grand mal seizure.
Three weeks earlier, Vicki had taken Aubrie to the doctor to get a routine MMR vaccination against measles, mumps and rubella.
“Within 10 days of having the shot, she went into a kind of a trance-like, low-grade fever,” Vicki remembers.
Having tried and failed to unearth the cause of the sickness and subsequent seizures that came with it, doctors fully medicated Aubrie, putting her through rounds of intense treatment with anti-epileptic drugs that had horrendous side effects.
“We were in and out of hospital trying to figure out what was wrong. I found out later it was acute disseminated encephalomyelitis [or ADEM, a brief but intense swelling in the brain and spinal cord]. At the time, I just knew that she was slipping away and couldn’t understand why. She was absolutely listless, not eating, only sleeping, and her personality was slipping away.”
A series of tests led to the discovery that Aubrie’s brain fluid had leaked into her spinal fluid. Admitted to Children’s of Alabama hospital in Birmingham, doctors decided she must have meningitis.
“They pumped her body full of some of the most aggressive antibiotics on the planet, presuming it was meningitis,” Vicki says.
As her little girl’s body was poked and prodded, Vicki had no idea they were both at the start of what was to be a long battle — a battle that would last more than a decade, until they finally discovered how cannabis could help Aubrie.
“In the hospital, my husband Paul just googled. We thought her reaction could have been a result of the MMR shot,” Vicki continues. “We told the doctors, ‘We believe if you give this child steroids, it could cure her.’ They ignored us and they let Aubrie suffer for 21 days.”
As a consequence, the medical community’s hunt for a meningitis diagnosis caused irreversible damage for Aubrie. “Twenty-one days of a leaky brain is really not good,” Vicki says. “After Aubrie failed to respond to treatment, the doctors eventually agreed with us, and gave her the steroids we had suggested would help. And she popped right out of it.
“At that point I was relieved,” Vicki adds. “I was grateful we had discovered the issue. Paul and I went on with our lives.”
However, what they didn’t realize at the time was just how severe the damage was, and that Aubrie’s ongoing symptoms and fits would eventually lead to an epilepsy diagnosis.
Vicki notes that Aubrie’s seizures were often undetectable in the sense that they didn’t necessarily exhibit as traditional seizures: “She would go off into these la la lands and have interactions with cartoon characters and we didn’t know it.”
Two years later, by which time Aubrie was seven years old, her seizures became so severe that they could be recognized as such — and by then, she was experiencing up to three severe fits a week.
Doctors started Aubrie on round after round of anti-epileptic drugs. Vicki could do nothing but stand by helplessly as her daughter suffered the terrible side effects of each of these medications.
Over a span of 13 years, Aubrie was placed on 17 different combinations of pharmaceutical drugs, each which horrendous consequences not just for her mental health, but also her physical health.
Vicki recalls what the drugs did to her daughter: hair loss, involuntary eye movement, inability to sweat normally, vertigo, nausea and throwing up, thoughts of suicide and aggression.
Then, in 2008, the medical team decided an extremely invasive surgical intervention was necessary.
Aubrie underwent a partial lobectomy, a procedure whereby part of the temporal lobe of the brain is removed.
“It was so barbaric,” Vicki says. “It’s really hard to even talk about. [Aubrie] became a big science project for [the doctors]. It was presented as cutting-edge [surgery], and of course, we believed them, that it would help her. She was having her own seizures, and then they would bring her into the hospital and withhold meds from her, and just let her seize and try to figure out where these seizures were coming from.
“In hindsight, that was absolute stupidity. It was horrific to go through these days where they would starve her brain of the anti-epileptic drugs that were working to a degree, then make her have seizures to figure out where they were coming from.”
But this paled in comparison to what was to come next, which, for Vicki, was the worst part of the entire unpleasant experience. “They opened her scalp up and they floated LEDs with saline solution in her brain,” she explains of the surgery, all the while choking back tears. “They put her scalp back on and she had over 40-something wires coming out. Then they hooked her up to a machine and turned off parts of her brain and would ask her to raise her arm and talk and read.”
Vicki and the doctors had hoped the experimental operation would put an end to Aubrie’s seizures once and for all. But within hours of having the procedure, the young girl seized again as she lay recovering in the intensive care unit.
Doctors then suggested she should undergo surgery number two.
Despite Vicki’s misgivings, Aubrie was so desperate to get well that she insisted she wanted to go through with it. Now aged 14, Aubrie had her second surgery. “They had to chisel her skull off of her head this time because all of the fluid had sealed the space up from the last operation,” Vicki says.
Immediately after the operation, Aubrie experienced another seizure while again on the ICU table. “She was left blind to her right side,” Vicki says. “I felt betrayed. I was so angry at the medical system at that point.”
Taking Her Health Into Her Own Hands With A Cannabis Intervention
Fast forward to Aubrie aged 17 years old, and Vicki started to notice that although she was still having the seizures, some of her symptoms didn’t seem quite so severe.
One day, Vicki brought this up to her teenage daughter. “I said to her, ‘Your symptoms don’t seem as bad, you’re not nearly as suicidal, and you’re eating. What’s going on? You’re happy, you’re smiling!’”
It was then that Aubrie admitted to her mom that she had been smoking cannabis in secret. “I knew nothing about marijuana, really, so I had to look it up,” Vicki says.
Still on the anti-epileptic drug Depakote, Aubrie started to supplement her medication with cannabis. And in a desperate effort to help ease her daughter’s pain and continue her on an upward health trajectory, Vicki started buying black-market weed off the street.
“I was buying an ounce a month, meeting these people down back alleys. We would sprinkle it on [Aubrie’s] pizza and that would help her appetite.”
Seeing the huge positive change in her daughter, in 2015 the family decided to sell up in their home state of Alabama and make the permanent move to Sebastopol in Northern California, where Vicki knew she would be able to legally obtain medical marijuana from a dispensary rather than from a street dealer.
With more access to diverse therapeutic products, Aubrie was able to take her cannabis experimentation further, soon realizing that cannabis oil with some THC component helped her condition improve even more.
Vicki didn’t know her daughter had by this stage tapered off her Depakote, before stopping it altogether. “She was dosing herself [with cannabis] — dabbing and smoking to help stay stable. Then, we started working with edibles and oil.”
And it was at then that Vicki witnessed firsthand just how truly effective cannabis as a medicine was for Aubrie, when she was able to pull her out of a grand mal seizure with cannabis oil alone.
“I knew it was a deadly one,” says Vicki of that seizure, “so I started dosing her with the oil and we got her stable. I was amazed it had such a massive impact on her. Every time Aubrie had a seizure, I was terrified it might be her last. But now I felt there was actually something which showed promise for a better life for her.”
In 2016, Vicki and Aubrie met with Dr. Bonni Goldstein, founder of Canna Centers, which offers medical evaluations to patients looking to incorporate cannabis in their treatment regimen. Goldstein advised Aubrie to start consuming higher doses of CBD oil.
Next, they reached out to Emerald Pharms dispensary and resource center in Hopland, Northern California, as well as CBD producer Care By Design, who were compassionate enough to help support Aubrie’s needs with donations of product.
“I had spent all my savings and maxed out all my credit cards,” Vicki admits. “They were so amazing how they helped us. This was before the full-on adult legalization had happened. We had cannabis drinks and cannabis chocolate bars that had enough THC in them that it would stabilize Aubrie. We had a 1,000mg chocolate bar that, if she had a bad day, she could just start eating that chocolate. They had probiotic chocolate bars — we tried everything!
“We upped her doses of CBD — we got all the way up to 300 milligrams of an 18:1 through the help of Emerald Pharms and Care by Design, and they were giving her all of it. They were completely amazing. It wasn’t until we found the 4:1 that we saw the greatest improvement.”
By then, Aubrie was fairly stable. Her seizures had backed off considerably and they were seeing a marked improvement in her cognitive responses. “She was getting more aware of herself,” Vickie explains.
Today, Aubrie is now aged 23 and continues to keep herself stable with not only her cannabis regimen, but also with healthier eating habits, adequate rest, and by exercising caution. While she still has seizures, on the rare occasion that one does strike, Vicki has 100mg syringes of cannabis oil handy that she can utilize to pull Aubrie out of the fit.
They also have a backup protocol that also includes, if needed, a pharmaceutical intervention.
Now, she makes her own oils, using nothing but an ultrasonic tool cleaner, a garlic press, and her kitchen oven. With Aubrie’s future now looking bright, healthy and filled with possibilities, Vicki says her daughter wants to do something in the cannabis industry, and the pair are working on an initiative they’re calling the Sebastopol Healing Project, an organization designed to help others who have been through a similar experience.
“Aubrie is possibly the best advocate to other people to understand how cannabis can help,” says Vicki of her daughter, who still has to take some form of anti-epileptic medication, because there are “things you just can’t mess with.”
However, Vicki hastens to add that Aubrie “is finally feeling independent. We are looking at her moving into a home apart from Mom. She’s got friends that look out for her. Of course, when she’s out, I don’t sleep, but she wears an anklet for first responders, should 911 have to be called. When she goes to any social situations, she tells people, ‘I have oil in my purse and I have my anklet with my information. If I have a seizure or go down, if you want to dose me, that would be great. If you call 911, please make sure that I get my oil in me.’”
Vicki adds, “I always believed Aubrie could and would have a better quality of life, and with cannabis it’s possible.”