After brain surgery and countless medications, Roger and Lora Barbour say cannabis oil has finally helped their daughter's severe epilepsy.
John Munson / NJ Advance Media for NJ.com
"I started crying and almost fell off my chair," Roger recalls. It was a milestone: Genny, who has autism and severe epilepsy, had been nonverbal for most of her life, speaking in one-word demands — "Eat." "Sleep." "Toilet." "Go." He says, "So this was unbelievable. A full, three word sentence!"
The next week, she was sitting in the upstairs bedroom and told her mother, Lora, "I love Mom!" They ran to show Roger, and had another breakthrough. "She said it, and then was able to say 'I love Dad' when I asked,'" Lora says. "For an autistic kid, she has trouble changing from one thing to another, so it was incredible."
After more than 15 years of trying to ease her seizures, her parents credit Genny's dramatic improvement to the daily doses of edible medical marijuana she's received since September.
"Her behavior has vastly improved, her clarity is incredible, and her seizures are under control," says Roger. Or, as Lora puts it, "She's not a zombie anymore."
But it's also put her family in the middle of a legal battle over the right to give her medication at school.
A Scary Diagnosis
High school sweethearts, Roger and Lora Barbour met in 9th and 10th grade. They married 10 years later and built a house in Maple Shade, New Jersey, near Philadelphia. Then, after an easy pregnancy, Genevieve (Genny) was born in January 1999, and was, for the first three months, completely healthy."Genny had just started to smile," says Lora. "You know that time when you wake up and can't wait to see your baby because she's like, 'Yeah, there's mom' and smiles at you and wiggles in her crib?" But one day, something was wrong. Genny was having what looked like a Moro reflex — but rapidly — flexing her hands and legs. And her pupils were quickly dilating back and forth, from tiny pinpricks to wide open.
They called her pediatrician and took Genny to Children's Hospital of Philadelphia's neurology department. She was diagnosed with infantile spasms, a rare epileptic disorder that can result in cognitive impairment, cerebral palsy, and even autism. Says Lora, "We knew it was bad."
Their physician recommended Sabril, a new drug that wasn't even FDA approved yet (it was eventually approved in 2009) and had to be shipped from Canada. During that time, Genny was having hourly seizures during the day, and every two hours at night. "We were a mess," admits Lora. "My nerves were so shot." After three months on Sabril, the near-constant seizing pattern gradually subsided.
When Genny was 2 years old, her parents made a radical choice: To remove part of her brain. For a frontal lobectomy, EEG wires are put on her brain to localize where the seizures were occurring. Then, doctors cut or use a laser to take out a part — the right frontal lobe in Genny's case — hopefully stopping the fits, explains Roger. "It was a nightmare experience ... and it was a total failure." The day after they returned home from two weeks in the hospital, Genny had another one.
Two years later, doctors ruled out another surgery because the seizures were occurring in a region of the brain where removal would do far more harm than good and possibly even cause paralysis.
Around this time, they also weighed whether to have another child. "That was pretty scary," admits Roger. But they went ahead and had Marlee, now 12, who is healthy and athletic. "She's totally fine."
Courtesy of Lora Barbour
Searching for Treatment
For more than 15 years, Genny has had seizures at least every other day, says Roger. "Grand mal, tonic-clonic, full-blown, fall-to-the-floor seizures." Anytime her parents hear a thud in the house, they start running. "We've saved her life at least six times, from drowning in a kiddie pool to getting strangled in bed — she would fall out and get choked by the sheets."Lora even sleeps in Genny's bedroom to keep her safe. "That's just our life," she says. "We'd lose our girl."
When Genny was 10, they tried a ketogenic diet,
a high-fat plan (supervised by a doctor) that sometimes helps with
epilepsy. Typical meals included a paste of 2 Tbs. butter, crushed
macademia nuts, ham, and mayonnaise, says Lora, "We'd have to force her
to each it, but we did that religiously for a year." Still, nothing
controlled her seizures.
The Barbours tried an exhausting range of medicines: Potiga, Neurontin, Gabitril, Topamax, Vimpat, Frisium, Onfi, Keppra, Fycompa, Trileptal, Zonegran, Phenobarbital, Depakote, Sabril and Dia-Stat.
"Genny had gone through all the good ones," says Roger. They also tried five newly-approved medications last year. None worked. Some had horrible side effects — from making her vomit to leaving her catatonic — and she missed 40% of her school days last year as a result.
They sought a second opinion. Another treatment option was ruled out: A procedure called Corpus Callosum, which divides the halves of the brain. "The hope is that the seizures would stop communicating from each hemisphere. But she would most likely be paralyzed on one side of her body," says Roger. They had reached an impasse.
Finally, one doctor mentioned trying medical cannabis. Genny qualified under New Jersey's medicinal marijuana program because her epilepsy was resistant to other conventional therapy.
She briefly entered into a clinical trial through the Children's Hospital of Philadelphia for Epidiolex, a form of CBD-only medical marijuana — but was "kicked out," says Lora, when she had more seizures the second month than the first.
Shortly thereafter, Lora completed the 9-month process to receive her medical marijuana license, and last August, they started Genny on the drug themselves.
While the cost adds up, their biggest concern is the lack of regulation. "In Colorado, you can buy oil like Charlotte's Web with a barcode on it — the grade, the strength, whatever. It's all pharmaceutically made," explains Roger. "In New Jersey, we can't even really get ours tested."
That can be risky: "I might make it stronger one time, or overcook it, or change the chemical composition," Lora adds. "But that's what we're left to do — and we don't have time to wait, because any seizure could kill her."
Genny takes a combination of three forms of cannabis. One is similar to the Colorado wonder drug Charlotte's Web, packed with cannabidiol (CBD), an antioxidant, and containing trace amounts of THC too small to create a high. "But she's also on some strains that have more THC because the Epilepsy Foundation and other advicates are convinced that epileptics need the whole plant," says Roger.
She receives three eyedropper-sized doses of the oil in a glass of cola — first thing in the morning, after school, and before bedtime. The number of her seizures has drastically declined — Genny only had two absences during the 2014-2015 school year. For the first time ever, her teacher even asked to make the goals of her individual education plan harder because she'd mastered things like counting to ten.
But she started having trouble at Larc, the non-profit special-needs school she attends in Bellmawr, New Jersey. Genny would start the day docile, engaged, and happy, and by the time she returned home, she would be aggressive and throwing tantrums. The medicine was wearing off in the afternoons. On bad days, her arms would be covered by self-inflicted bites and bruises as she vented her frustration at being restrained in a chair.
Her doctor recommended a fourth dose with lunch. But when they asked permission, the Maple Shade school district and Larc officials immediately said no. (Maple Shade school district representatives declined to comment.)
Many other parents operate under a "don't ask, don't tell" policy, says Roger, where they put their children's medical marijuana in applesauce and don't tell the schools. The Barbours feel they're being penalized for trying to be upfront. "We're rule followers," says Roger. "We didn't want to break the law, we didn't want to cheat."
The Barbours tried an exhausting range of medicines: Potiga, Neurontin, Gabitril, Topamax, Vimpat, Frisium, Onfi, Keppra, Fycompa, Trileptal, Zonegran, Phenobarbital, Depakote, Sabril and Dia-Stat.
"Genny had gone through all the good ones," says Roger. They also tried five newly-approved medications last year. None worked. Some had horrible side effects — from making her vomit to leaving her catatonic — and she missed 40% of her school days last year as a result.
They sought a second opinion. Another treatment option was ruled out: A procedure called Corpus Callosum, which divides the halves of the brain. "The hope is that the seizures would stop communicating from each hemisphere. But she would most likely be paralyzed on one side of her body," says Roger. They had reached an impasse.
Finally, one doctor mentioned trying medical cannabis. Genny qualified under New Jersey's medicinal marijuana program because her epilepsy was resistant to other conventional therapy.
She briefly entered into a clinical trial through the Children's Hospital of Philadelphia for Epidiolex, a form of CBD-only medical marijuana — but was "kicked out," says Lora, when she had more seizures the second month than the first.
Shortly thereafter, Lora completed the 9-month process to receive her medical marijuana license, and last August, they started Genny on the drug themselves.
Courtesy of Lora Barbour
Making Marijuana at Home
Through a network of other parents of epileptic children on medical marijuana, Lora got instructions to cook the plant into oil. (Standardized information on preparation and doses is difficult to find because scientific studies have been limited — and the effects can vary from patient to patient.) Once a month, she drives three hours to a dispensary to buy the raw marijuana — for $600 cash. It's not covered by insurance. At home, she grinds it into a powder, bakes it in the oven on a cookie sheet, then puts that into a piece of cheesecloth that is tied like a tea bag. Then, it cooks in a crock-pot of pure coconut oil for three hours.While the cost adds up, their biggest concern is the lack of regulation. "In Colorado, you can buy oil like Charlotte's Web with a barcode on it — the grade, the strength, whatever. It's all pharmaceutically made," explains Roger. "In New Jersey, we can't even really get ours tested."
That can be risky: "I might make it stronger one time, or overcook it, or change the chemical composition," Lora adds. "But that's what we're left to do — and we don't have time to wait, because any seizure could kill her."
Genny takes a combination of three forms of cannabis. One is similar to the Colorado wonder drug Charlotte's Web, packed with cannabidiol (CBD), an antioxidant, and containing trace amounts of THC too small to create a high. "But she's also on some strains that have more THC because the Epilepsy Foundation and other advicates are convinced that epileptics need the whole plant," says Roger.
She receives three eyedropper-sized doses of the oil in a glass of cola — first thing in the morning, after school, and before bedtime. The number of her seizures has drastically declined — Genny only had two absences during the 2014-2015 school year. For the first time ever, her teacher even asked to make the goals of her individual education plan harder because she'd mastered things like counting to ten.
But she started having trouble at Larc, the non-profit special-needs school she attends in Bellmawr, New Jersey. Genny would start the day docile, engaged, and happy, and by the time she returned home, she would be aggressive and throwing tantrums. The medicine was wearing off in the afternoons. On bad days, her arms would be covered by self-inflicted bites and bruises as she vented her frustration at being restrained in a chair.
Her doctor recommended a fourth dose with lunch. But when they asked permission, the Maple Shade school district and Larc officials immediately said no. (Maple Shade school district representatives declined to comment.)
Many other parents operate under a "don't ask, don't tell" policy, says Roger, where they put their children's medical marijuana in applesauce and don't tell the schools. The Barbours feel they're being penalized for trying to be upfront. "We're rule followers," says Roger. "We didn't want to break the law, we didn't want to cheat."
Courtesy of Lora Barbour
Their Legal Battle
In December, they petitioned the state Office of Special Education to let Genny to take her lunchtime dose at school. When that was denied, they sought relief through the state courts, but in January, Administrative Law Judge John S. Kennedy ruled in favor of the school district, citing that The Drug Free School Act and the New Jersey Compassionate Use Medical Marijuana Act conflict with each other. Another legal hurdle is that under state medical marijuana law, only Lora, Genny's designated caregiver, can administer her medicine — and not a school nurse.As an attorney, Roger has frequently helped advise school districts like the one he's now suing. The school attorneys even spoke to him about what he would have done in their position, and, he admits, he doesn't know. "It's a hard decision, because it's illegal under federal law and you're funded by federal dollars. I understand it, but it sucks. This is my daughter."
When Genny was home for spring break in April, her parents gave upping her doses a try — with staggering results. She was seizure-free for seven days, the longest stretch ever. But when she returned to school, they were faced with a choice: Skip her lunchtime dose and risk regression, or only send her to half-days at Larc — at the cost of her education. Says Lora, "We love her school, but what do you do as a parent? We couldn't risk it."
The school proposed that Lora drive to school mid-day to give Genny her dose off school grounds and then bring her back in the afternoon, which the Barbours rejected. "She was having these behavior issues and tantrums, and I can't control her," explains Lora. If Genny escaped on the busy street near the school, she could have rushed into traffic. "It just wasn't safe." And for an autistic child who struggles to transition, the disruption could potentially make things worse.
"All we want is a court order that says the nurse has to give it to her at lunch," says Roger. "Other parents don't have to go to school to give their kids medicine."
On June 25, the Barbours will present their appeal before the same judge. If they lose, they say they will appeal to the federal level. But they may not have to: On June 22, two state legislators introduced a bill that would require school boards to set policies allowing medical marijuana to be used in schools — by parents or a person they designate. (It would allow edible oil only, no one can smoke pot on school grounds.)
For the rest of the school year, Genny went to half-days, which she will do for the summer session unless they get a court order. With four doses a day, the Barbours have decreased Genny's other anti-seizure medicines. She's down to just Depakote, which she has taken since infancy.
They compare the effects of marijuana on Genny to giving amphetamines to children with ADHD. "That slows a child who is off the walls down, even though it doesn't make sense," says Lora.
"We're not getting Genny high, because it doesn't work on her body that way. She doesn't get like people who smoke a joint, all glassy-eyed. She gets more alert."
Genny talks, does puzzles, dances, and sing songs. She teases and even acts bored. "I swear, she's understanding emotions," muses Roger. "It used to be, 'Genny let's do this, Let's do that.' She instigates it now. She'll go get a coloring book, look in your face, and say, 'Color.' That never happened!"
"Even if it stopped working on her seizures, every other benefit of it is unbelievable," says Lora. "It's ironic. We've finally found something that works to keep her safe, and they won't let us use it."
No comments:
Post a Comment