No More Ambulance Trips
Four-year-old Brooke Adams is taking her morning medicine. Her mom, Jana Adams, squirts it into her mouth as Brooke sits on the kitchen counter of their Santa Rosa home.
It’s a cannabis tincture with a high ratio of CBD, one of the cannabinoids in the marijuana plant that doesn’t make you high.
Brooke has pale red hair that’s pulled into pigtails. She’s wearing raspberry colored eyeglasses. And she loves hugs.
On this recent morning, she reaches for a visitor and beckons: “Huuuug.”
Brooke has Dravet Syndrome — a rare and severe genetic disorder that causes seizures and developmental delays. She’ll live with it for the rest of her life. Adams says Brooke began having seizures at three-and-a-half months old — and they were traumatic.
“She would have hour long seizures,” says Adams. “Every time, we’d have to call 911 to have her [taken by] ambulance to the ER, to load her up with all kinds of drugs.”
The longest lasted three hours.
By the time she turned one, Brooke was taking a hefty list of prescribed medications.
First up was Keppra. Next, phenobarbital. Then came Trileptal, eventually swapped out for another. On top of all that, Topamax. Four at once.
Those medicines are meant to prevent seizures, but Adams says they didn’t work for Brooke. As for stopping the seizures once they started — that required another drug, known as a “rescue” medication.
Whenever they administered it, Adams says, Brooke “would be intubated because her breathing would slow down so much.”
Hoping for another way, Adams connected with a nationwide community of parents using cannabis to treat their kids’ seizures. And a local doctor issued Brooke a medical marijuana card when she was just 15 months old.
Now, Brooke takes that daily CBD tincture and a rescue drug made of cannabis oil that’s high in THC. (That’s the best-known cannabinoid in the marijuana plant, the one that does get you high.)
Adams says those drops of THC oil dribbled between Brooke’s gums and teeth tend to stop her seizures within three minutes. Her doses come in little vials. Wherever she goes, they go.
Brooke takes fewer prescription meds now, and her mom says she has fewer seizures. But the main change is that those long ones, known as status seizures, are really infrequent.
That means no more ambulance trips with a breathing tube.
“Her last status seizure was last August,” Adams says, “and before, she was every five weeks to the day.”
But placing Brooke in preschool was tough. There’s a federal law — called the Individuals with Disabilities Education Act — which mandates that kids receive a “free, appropriate public education in the least restrictive environment.”
That means districts need to make accommodations for kids like Brooke.
Still, before the summer of 2016, the Rincon Valley Union School District told Adams: Those vials of THC oil that are always with Brooke? They’re not allowed at school.
“They said, ‘here’s all the things that you could have,’” Adams recounts, “’but well, she can’t be on campus so you’ll have to just have her at home.’”
But homeschooling is not what Adams thought was most appropriate for her daughter. And she knew the law. If the district couldn’t accommodate Brooke, they’d have to find another school that would.
She told the district: “She needs to go to a private school if you can’t have her.”
The district got on board. Adams called dozens of private preschools before she found one that had space and would accept Brooke with her seizures — and cannabis meds.
The district pays for that placement. And a lot of other accommodations, like speech therapy, occupational therapy, physical therapy, and adaptive physical education. As well as a one-on-one nurse, Yolanda Brindis, who stays with Brooke all day, riding to and from private preschool with her in a van that the district sends to fetch them.
But Adams knew her family would soon face a bigger hurdle: getting Brooke into kindergarten this coming fall.
“That’s why we’re pushing to get to Sacramento and get something passed before the fall,” she says, “because I don’t know where her placement will be in the fall if she can’t go to public school.”
Pushing to Change the Law
That “something” is a law, one that would allow Brooke and other kids like her to be in public school with their cannabis medication.
Adams hired Joe Rogoway, a cannabis-industry attorney, to help her press for that. And the school district quickly got on board with the idea.
Cathy Myhers, Assistant Superintendent for Student Services for the Rincon Valley Union School District, can’t discuss the cases of individual students. But she says that, generally, federal law requires her district to offer “free and appropriate” public education to kids who are “identified as children that have special needs.”
Yet cannabis prohibition prevents that.
“[W]e feel as though our hands are tied,” Myhers says. “If we can’t provide her that rescue medication, we can’t serve her on a public school campus.”
Myhers and other school district officials met with a local state senator to see if California could do what a handful of other states have already done. Maine, New Jersey and Colorado have all changed state law to require school districts to accommodate students who have medical-marijuana recommendations. They permit a parent, legal guardian, and in some cases a primary caregiver, to administer cannabis medication at school.
Similar legislation is pending in Washington State.
Myhers has started to hear from other California districts with similar dilemmas. In California, state health codes forbid the practice, as does the recent law that governs legal marijuana for adults. It explicitly states: No cannabis at schools.
Those state laws could be modified. But there’s another problem: Federal law bars illegal drugs, marijuana among them, within 1,000 feet of any school or school district building.
Myhers says if the district violates that federal law, they risk losing millions of dollars in federal funding.
But it turns out, all those other states that have passed school cannabis laws are taking a gamble that the feds won’t come after them.
A federal judge in Illinois recently encouraged state officials to consider crafting a similar law after the state attorney general agreed not to prosecute school officials for giving an 11-year-girl her cannabis meds on campus. He gave officials until April to work out a statewide policy or craft state legislation that would apply to other families, too.
And a 12-year-old girl who uses medical cannabis for her seizures is among five plaintiffs who are suing Attorney General Jeff Sessions in federal court in New York. They argue that the Controlled Substances Act, which classifies cannabis as illegal, infringes upon a whole bunch of constitutional rights. There’s a hearing in that longshot case next month.
Whether California will act remains to be seen. There’s no bill yet, just a conversation. One thing is clear though: Being able to go to school has been huge for four-year-old Brooke Adams.
Brooke’s School Day
On a recent morning, the district’s van driver greets Brooke warmly for the trip across town. She and her nurse arrive at preschool right in time for hugs — and speech therapy in the hall with one of four practitioners who comes to see Brooke every week.
Then, Brooke joins the other kids, for circle time. There’s singing, and imaginary games, followed by snack time.
Getting Brooke into preschool has immersed her in a whole world of other kids. It’s also allowed her mom, Jana Adams, to go back to work as a real estate broker for the first time since Brooke was diagnosed.
But what matters most now for Adams is what comes next.
“My whole goal is to get her to public school by kindergarten,” she says at her downtown office.
There is no bill yet, just a conversation. But Rogoway, Adams’ attorney, tells me he’ll work behind the scenes to help Adams — and her school district — move legislation forward.
Colorado’s is called “Jack’s Law.” New Jersey’s was inspired by a girl named Genny. And Maine’s by young Cyndimae, also diagnosed with Dravet syndrome.
So maybe, Rogoway says, if they’re successful in passing legislation that allows students to take their cannabis medication at school, California’s should be called “Brooke’s Law.”