Patient Story: Vicki & Aubrie Hill and Intractable Epilepsy
Reported by Hawaiian Ethos Medical Director, Stacey Marie Kerr MD
A few weeks ago I met Vicki and Aubrie at an event here in Northern California. When they found out that I was the medical director for Hawaiian Ethos, Vicki couldn’t wait to talk to me. With courage and persistence over many years, they have figured out what works best for Aubrie’s epilepsy, and were eager to have me tell their tale. There is a wealth of scientific evidence on the use of cannabis in seizure disorders but nothing carries the message as well as a good story with a happy ending.
This is the story of a vibrant young girl and her determined, brave mother. In 1999, at age five, Aubrie got her scheduled MMR booster. Ten days later she developed a low-grade fever that lasted for 24 days. As the fever persisted, she was getting dehydrated and going deeper into what her mother called a ‘deep, strange sleep.’ She lost her ability to speak and her personality changed, with a loss of interest in her surroundings – unusual for this active five year old. After three weeks, her mother insisted she be hospitalized in Huntsville, Alabama where they lived, because she knew something was terribly wrong. Aubrie was seen by neurologists and, along with a myriad of other diagnoses, she was diagnosed with multiple sclerosis. After one week in the hospital she experienced her first seizure, had a lumbar puncture, and they found grey matter in her cerebrospinal fluid. She was diagnosed with meningitis and given 21 days of antibiotics, and started on several seizure medications. She was then transferred to Birmingham for ICU care.
After the 21 days of antibiotics, the doctors realized it was not infectious meningitis at all and gave her steroids for Acute Disseminated Encephalomyelitis (ADEM), a rare side effect of the MMR booster. She improved immediately and was apparently back to normal.
But it turned out she was not normal. For the next two years, unbeknown to her parents, she was having conversations with cartoon characters in her mind. Finally, her mother observed a partial-complex seizure that looked like the original ADEM. They took her to the University of Alabama Children’s Hospital where she was given multiple anti-seizure medications, none of which were effective. At this point, she was getting partial-complex seizures 3-4 times a week and they were increasing in intensity and frequency.
The left temporal lobe appeared to be the source of the seizures, so she was referred to neurosurgeons who recommended surgery for a seizure disorder that was not responsive to any of the medications available. The family finally agreed to this so the surgeons removed a large amount of brain tissue: the left temporal lobe, some of the hippocampus and some of the frontal lobe. Then, in the ICU, right after surgery, she had her first grand mal seizure. She was in 8th grade.
A young girl this age wants to get her driver’s license. Despite medications, she was still having small seizures regularly but was able to hide them from her parents for a while. But when it became evident she was not seizure-free, another surgery was recommended. Aubrie decided on her own that she wanted this surgery; she hoped it would cure her. Again, in the ICU after the surgery, she had a large seizure and noticed that she had lost vision on the right side of her visual field. Six years later, the family was finally informed what the doctors already knew: she had had a stroke causing hemianopia (blindness over half her field of vision). There were also cognitive issues, and alexia without apraxia – difficulty seeing words, an inability to read, and difficulty pronouncing the right words for what she meant to say. She was in 9th grade. The trauma for a girl at this age was intense.
Then, when Aubrie was 18, puberty came along. With the onset of puberty, she developed tonic-clonic grand mal seizures, some lasting more than 20 minutes. They were violent and often difficult to stop with any medications at hand. She was tried on 17 different medications and ended up on 2: Vimpat and Depakote – at maximum dosages. The other fifteen drugs had to be abandoned with “unacceptable side-effects.” Still, every time her period would come around, or the full moon, she would have at least one grand mal seizure, often requiring ER visits due to the severity and inability to control with home medications. She would have more than 4 in a 24-hour period during this early-puberty time.
Aubrie had a boyfriend, and they began to secretly smoke recreational marijuana. She was stealing money from her mother to buy it and telling no one. But her mother noticed that she suddenly changed from a suicidal miserable girl who wouldn’t come out of her room into a happy young woman with an enormous appetite. Asked ‘What gives?’ Aubrie told her about the cannabis. Vicki said no more stealing, but it’s obviously good for you so I’ll get it for you in a safe way. So, Mom took over finding marijuana for her daughter in the prohibitive state of Alabama. It did not seem to affect the seizures, but it did make her happy and helped her gain some weight back. At $400/ounce every month for substandard weed, they would parse it out to last the whole month. It was worth it.
Then Vicki found some oil being made in Santa Barbara, CA. Over an 8-month period, she sold some land she had inherited, and spent $16K for the oil that helped, but still didn’t stop the seizures. She knew she was on the right track.
Through Facebook, she connected with a grower in Tuolumne County, CA and he suggested she take the green herb, crush it, and sprinkle that and the kief over her daughter’s pizza. This increased dosage decreased the severity of the seizures, but she still had grand mals every month around her period time. They decided to move to California, where they could really learn and use this medicine.
Vicki sold her house in Huntsville, and $20K in debt, she, Aubrie, and their Maltese dog landed at an Airbnb in Santa Rosa, CA with no local connections or set plans. Two days after landing in CA, Aubrie had a grand mal and Vicki knew she had to get some cannabis quickly. They drove to Tuolumne County where her new friend provided medicine that was rich in THCA. It helped, but she needed large amounts. The THCA decreased the severity and frequency of the seizures, and she could stop one from coming on if the aura was noticed and the medicine was given under Aubrie’s tongue. For the next year they regularly drove to Tuolumne County (4 hours each way) to get this medicine. They then added THC to the mix and found that this would stop the seizures immediately, but would not prevent them. Plus, Aubrie was stoned all the time, not a great situation. But they knew they were getting closer. As Vicki is quick to point out: “There are worse things than Aubrie stoned. She can function with THC, but she could not function on the maximum doses of Depakote.”
A year ago, they found Care By Design and purified CBD products. Aubrie started taking CBD oil capsules twice a day, each with 30mg of CBD for a total of 60mg a day. She stayed on 200mg of Vimpat twice a day, with no side effects. And she took a single dose of Ativan 0.5mg every night, allowing her to sleep well through the night. The seizures decreased in frequency dramatically.
Still, during full moons and her period, Aubrie could get grand mals. They had several visits to the local hospital when rectal Diastat would not work for stopping violent seizures.
Earlier this year, they met a physician who specializes in pediatric epilepsy and it was recommended that Aubrie take 300mg each day of CBD, according to her size and weight. So they increased the CBD. She is now taking 100mg twice a day and it is holding her nicely. In addition, she is using a concentrated oil-extract that has 8.48mg CBD and 12.65mg THC, taking mom-made capsules in MCT (medium-chain triglyceride) oil twice a day. She has had stretches as long as 2-3 weeks with no seizures which they consider a miracle. If she gets an aura, she increases the CBD and it can stop the seizure before it starts.
One year after starting the CBD, she is brighter, clearer and more active than she has been in years. She had made friends, will take an Uber to town to play pool, and has recently stated that she is ready to learn again. Aubrie is having a life.
At 22, Aubrie may never live independently, she wears an ID bracelet with her condition and medications listed, and she will never drive a car. But she is finally managing her ‘intractable’ seizure disorder and is happy to be alive.
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