Jana Adams, Sonoma, California
Jana Adams is on a two-pronged mission to educate people about what medical cannabis can do for children with seizure disorders.
On the one hand, she’s spent the last few years explaining to California lawmakers why state law needs to accommodate medical cannabis in schools. On the other, she’s sharing with others the knowledge and resources that were so hard for her to come by as she looked for solutions for her daughter Brooke.
Brooke hadn’t even reached her first birthday when the seizures started. In March 2014, she was diagnosed with Dravet Syndrome, a rare, severe seizure disorder. Soon she was on three seizure medications but still having episodes that lasted up to three hours. Attempts to control them at the hospital led toher being given so much medication she couldn’t breathe on her own, coded, and had to be intubated. The local hospital transferred her to Oakland for more advanced care.
“It was the scariest time in my life,” Jana says, “as I watched her seize over and over again, even after getting multiple doses of strong anti-seizure medications.”
After a few days in the pediatric ICU in Oakland, Brooke was able to go home, now with four medications to take twice a day. Jana quit her job to be a fulltime caregiver for Brooke and try to figure out a treatment plan.
A mutual friend introduced her to another parent of a child with Dravet Syndrome, Jason David, who had been exploring cannabis treatments after doctors had said there was nothing more they could do for his son, Jayden. Through trial and error with various types of cannabis extracts, Jason developed a cannabis oil he calls Jayden’s Juice that has proven effective when nothing else worked. At an event for parents Jason put on in Modesto, Jana heard from doctors, specialists, and other parents about the potential cannabis holds for treating neurological conditions. She took her sister-in-law, a nurse, so she could understand and explain the medical side.
“It was just the information I needed to talk to Brooke’s neurologist,” Jana says.
Clinical trials were then underway for Epidiolex, the CBD extract developed by GW Pharmaceuticals, but Brooke didn’t qualify to participate because she was too young at not yet two, and her seizures, though they lasted for hours, came only every five weeks. Brooke’s doctor suggested adding a fifth medication, Stiripentol, but Jana and her husband refused. Both were suspicious of cannabis, but it was time to try it.
In September 2014, Brooke got a recommendation from a local physician, and Jana registered as her caregiver. The CBD variety another parent recommended didn’t work, but Jason David visited Santa Rosa that December, and Jana started Brooke on Jayden’s Juice.
The seizures dropped by half.
They went back to the neurologist to talk about weaning Brooke off the benzodiazepines. As she tapered off, they add some THC to ease the withdrawal symptoms. She reduced her previous medications by half and was able to go off the ketogenic diet that may help control Dravet Syndrome.
Once Brooke turned three, she got an IEP as a special education student, but the school district refused to allow her to attend a public preschool because of her need to have cannabis oil with her as a rescue medicine for when seizures started.
“At first, they just offered to send a teacher for an hour a day, but we fought all summer trying to find a preschool,” Jana says. “We negotiated an agreement for the district to pay for a private preschool, a one-on-one nurse to attend, and special help.”
Last September, a judge ruled against the district’s arguments for excluding Brooke and said they have to allow her to attend, and her nurse can give her the cannabis oil as needed.
The district is obliged to provide transportation to school for students, but they refused to allow Brooke on a school bus, even with her nurse in attendance, because the school is a “drug-free zone.” In November the district agreed to send a bus for Brooke and her nurse after it had dropped off all the other kids at school.
“It worked but just kinda seems silly,” Jana says. “She’s with a one-on-one nurse, so the medicine is pretty secure. It’s a rescue medicine, so she has to have it with her to stop seizures when they start.”
Last year, Brooke was in a special education kindergarten classroom with eight students, but this fall she will transition to an inclusion classroom with general education students.
Jana has been pursuing a change in law to accommodate other children like Brooke, encouraging state lawmakers such as Sens. Jerry Hill and Mike McGuire to advance legislation that would allow medical cannabis in public schools.
“When Senator Hill said he didn’t have enough support for his bill, we decided to take the case public, to help other families,” says Jana. “It’s a child’s right to go to school.”
Brooke has three older siblings, ages 13, 15 and 18. The demands of Brooke’s care have meant the family has changed vacations and other routines, often at the expense of the other children, but they understand her needs, and the turn to cannabis. The oldest came home from college to join Jana at the ASA/California NORML lobby day in Sacramento on May 1.
“Going away and coming back helped him see how much it’s changed her quality of life,” Jana says. “He sent me a note saying ‘thanks for doing so much for Brooke.’”
Even Brooke’s 13-year-old sister understands what’s at stake. She’s also in a caregiver role, administering cannabis oil when needed. She even filmed the seizure that was shown during a Today Show segment about Brooke,and intervened with a history teacher who made disparaging comments about cannabis.
“Medical cannabis has been life changing for us,” Jana says. “We couldn’t go camping for fear of being helicoptered out. Now the seizures will stop within minutes, so we can contain it.”
Since Brooke’s case became public, Jana has connected with parents across the country about treatment and lobbying to get bills passed in New Mexico, Colorado and New Hampshire. To help educate folks closer to home in Santa Rosa, Jana helped organize the August 10 symposium with Dr. Bonni Goldstein, Brooke’s physician from Los Angeles, and other experts. Attendees at the symposium will also have a chance to learn how to lobby from other parents who have worked to get bills passed in the other states.
“We were on Dr. Goldstein’s waiting list for two years, but it was worth it to have the benefit of her experience,” Jana says. “I wanted to have this event with a knowledgeable doctor so other parents could see if cannabis might be something to try with their child. This event is to give back what others have given to us.
This profile was originally published in the August 2019 ASA Activist Newsletter
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