Santa Rosa family fights for daughter’s right to to go to kindergarten — with her cannabis meds | KALW

Santa Rosa family fights for daughter’s right to to go to kindergarten — with her cannabis meds

Sep 11, 2018

A growing number of parents whose kids suffer from seizures have discovered that medical cannabis can reduce their frequency and intensity. Over the past few years, seven states have passed laws giving kids access to that medicine while they’re at school. California’s not quite there. For one Santa Rosa family the stakes are high and the fight isn’t over.

When I first met Brooke Adams last fall, the four-year-old with strawberry blond pigtails was attending a private Santa Rosa preschool.

She joined the other kids at circle time for sing alongs, and mingled with them at snack time. When it was time for speech therapy, physical therapy, and occupational therapy, those practitioners came to her.  

Interacting at school with other children helped Brooke thrive, said her mom, Jana Adams. The little girl was diagnosed with Dravet Syndrome when she was just three months old.  It’s a rare and severe form of childhood epilepsy that often causes developmental delays.  

Like a lot of kids with Dravet, Brooke didn’t respond to a long list of heavy-duty pharmaceutical drugs. Every time she had a seizure, Jana told me, “we’d have to call 911 to have her ambulanced to the ER, to load her up with all kinds of drugs. Her longest one was three hours.” The rescue medication they tried to stop seizures would often slow her breathing so much, she would have to be intubated.

Until Jana and her husband discovered medical cannabis.
 

Jana Adams, Brooke’s mom, administers a cannabis tincture to Brooke at their Santa Rosa home in Fall 2017.
Credit Lee Romney / KALW News

They use one tincture a few times a day to prevent seizures. That one’s mostly CBD — a cannabinoid in the marijuana plant that doesn’t make you high.  Another — rubbed on her gums — stops the seizures once they start. That “rescue medication,” made from the psychoactive cannabinoid THC, works in about three minutes, according to Jana.

“It’s been life-changing,” Jana said of medical marijuana.

Except when it was time for Brooke to start preschool. The local public school district — Rincon Valley Union — told Jana both federal and state laws ban cannabis on school grounds. Violating that federal law can put school districts at risk of losing federal funds. End of story right? Well, no, because a different federal law guarantees students with special needs the right to a "free and appropriate public education". 

So the district paid for Brooke to go to private preschool, and for a one-on-one nurse, who was always at Brooke’s side with those little vials of THC oil, her rescue medication.
 

Brooke Adams, now 5, spent two years at this private Santa Rosa preschool — with her cannabis rescue medication.
Credit Lee Romney / KALW News

But Jana wanted her daughter in public school come kindergarten this fall. So she started lobbying her legislators last year “to get to Sacramento and get something passed before the fall because I don’t know where her placement will be in the fall if she can’t go to public school.”

When I go back to visit Jana and Brooke, they greet me at the door along with the family dog. Brooke is now 5. It’s early August and the school year is about to start. Things haven’t gone as Jana had hoped, but she tells me that in some ways, “we knew we’d be here.”

So what has changed? Laws in seven other states now allow kids some access to their cannabis meds at school. Now, California’s trying something similar with Jojo’s Act.  Jojo Jiminez lives in San Bruno, and the 19-year-old suffers from a different debilitating form of childhood epilepsy. His State Senator, Jerry Hill, learned about him last year, and how, to get the regular cannabis tinctures that keep the teenager’s seizures in check, “he would have to be removed from school in a wheelchair and by law taken 1000 feet away from the school where the drug could be administered and then his mother would have to wheel him back.

“It didn’t seem right,” Hill says.

So he authored a bill that would permit California school districts— but not require them  — to let parents or legal guardians administer cannabis meds inside school to kids who have a doctor’s recommendation. The bill is now on the governor’s desk.  But Jana Adams says, for her daughter, there’s a hitch. When Brooke needs her THC oil as a rescue medicine, she needs it immediately. Jana can’t get there fast enough.    

“I mean I don’t know when I’m gonna have to dose her,” Jana says as she and Brooke flip through picture books.  “That’s the whole issue… You know that bill doesn’t help at all really.”

That’s a problem everywhere. Parents can’t always be on campus when kids need these meds. Illinois had to add a last-minute amendment that also allows a “designated caregiver” to dispense cannabis at school. New Jersey did something similar. And early this summer, Colorado tacked “Quintin’s Amendment” onto its law. That allows school personnel to dispense the cannabis meds, or designate someone who can, like a contracted nurse.

Brooke needs that, but Senator Hill doesn’t think that’ll fly in California now. Marijuana is still against federal law, and the Association of California School Administrators lobbied against his bill out of concern that they’d lose federal funds.  Hill thinks that’s unlikely.

“You know, when you look at a prioritization this would be I would think low on the totem pole there,” he says.

The administration hasn’t yet gone after any school in the country for allowing kids to take cannabis meds. Still, there’s a fear that California might just make a tempting test case for the Trump Administration.

“I do think that no one can really anticipate the inconsistencies of Washington today,” says Hill. “California seems to be singled out as much as possible for some type of retribution or sanctions.”

Just like the other states, Senator Hill says, California needs a starting point, “and that’s what I think SB 1127 does, it gives students with severe medical disabilities a chance to attend school, and allow them to be an active part of their peer community.”

If the governor signs the bill, Hill says he thinks it’ll be at least a year before the state would okay an amendment to help kids like Brooke, whose symptoms are unpredictable and who may need medicine administered immediately.

So for now, to avoid having Brooke homeschooled, Jana says her family decided to go to court, a special ed hearing held before a state administrative law judge, to let him decide, “Are you going to let a sick child take her medication so that she can go to school or you going just keep people at home?”

These types of hearings are usually private, but Brooke’s family petitioned to open theirs to the public in hopes of helping other families. Jana also stirred up a lot of media interest. Brooke’s story was featured by Megyn Kelly on her NBC daytime talk show, just a day before her hearing, in late July.

Brooke’s preschool teacher testified about all the progress she made interacting with other kids during her two years there. And Dr. Joseph Sullivan, one of Brooke’s doctors who is director of UCSF’s Pediatric Epilepsy Center, submitted a declaration on her behalf. As for school district officials? They say they’re caught between two federal laws. Rincon Valley Union Assistant Superintendent Cathy Myhers told me they want guidance — and some cover.

“As a district we just want a level of protection, whether it's a judge directing us to do something, then we feel like, okay, if the judge tells us we can have a student on campus with their medical marijuana, we feel like, ‘Okay, we can do it.’”

Myhers worked with Senator Hill’s office on Jojo’s Act and backs it as a good start, even though it doesn’t quite go far enough to help Brooke. (The California School Boards Association also supports the bill.)
 

Brooke Adams, 5, who has an intractable form of childhood epilepsy called Dravet Syndrome, reads in her Santa Rosa living room in August 2018.
Credit Lee Romney / KALW News

Back at home, the little girl spends her last days before kindergarten pulling book after book out of a bin in the living room so she and her mom can read together.

That’s right, kindergarten. Earlier this summer, the judge issued a temporary order that let Brooke start public school last month — with her cannabis oil and a new nurse.
    
The judge expects to issue his final ruling by the end of this month. It would apply to Brooke alone. If he rules against her, Jana says,  “I'm just going to have to keep fighting because it's not fair. We pay taxes, we pay for bonds . . . and for her not to be able to go to school and enjoy the things that we're paying for through our tax money, I mean, something needs to change.”

The governor has until the end of this month to sign or veto Jojo’s Act. If he signs it, Jana says, it still won’t help her daughter. But she plans to then start pushing for an amendment that would allow Brooke’s one-on-one nurse to dispense that rescue medication — at school.