Dad fights to keep growing pot to ease son’s seizures
Haiden Day, 5, has a severe form of epilepsy. His parents found that non-psychoactive chemicals in marijuana seem to calm his seizures. But proposed changes in the state medical-marijuana law would make treatment impractical, maybe impossible for Haiden, they say.
Seattle Times staff reporter
Ryan Day describes himself as the last guy who would ever grow marijuana.
But he is doing just that in the garage of a middle-class house in Thurston County.
Day’s 5-year old son, Haiden, has Dravet syndrome, a severe form of epilepsy.
Haiden’s 45-pound body is wracked by seizures, often more than 100 a day, which have delayed his cognitive development, leaving him essentially a 2-year-old inhabiting a 5-year-old’s body.
“It’s like his little mind is under assault all day long,” said Ryan Day.
Haiden’s parents have tried various prescription drugs — even resorting to a canine epilepsy drug — with mixed results. Some drugs curtail the seizures but come with disturbing side effects.
Then, through a network of parents, they heard that a certain kind of marijuana had been used to treat Dravet syndrome.
That discovery has turned Ryan Day, 33, into an unlikely activist. A former Marine and a professional advocate for children’s health, Day says he’s never tried pot himself.
But he has started lobbying against a proposed clampdown on the state’s medical-marijuana system.
Aimed at reconciling the largely unregulated medical system with the state’s new highly regulated recreational system, the proposals include a ban on home growing. They would also reduce the amount of marijuana patients can possess, and eliminate dispensaries, steering patients instead into new recreational retail stores.
Day argues that he needs to grow his son’s marijuana because it would be prohibitively expensive to buy. He needs more for a ready supply than the proposals from three state agencies would allow. And he has little confidence that new retail stores — geared to serve recreational users looking for a good buzz — would stock a reliable supply of the rare strains his son needs. Haiden’s medicinal pot has no or little THC, the key psychoactive chemical in most pot, and it has a high percentage of cannabidiol or CBD, a chemical believed to have analgesic, anti-inflammatory and anti-anxiety properties.
Day knows that lawmakers are skeptical of the medical system and some believe most patients are gaming the system. “You know what my angle is? I don’t want my son to die,” Day said.
Day calls his family “marijuana refugees” who moved to Washington state in July for its temperate climate, relatively good schools and medical-marijuana law. Day, his wife and their three children had been living in Virginia, where his wife is from and where Day went to work after his stint in the Marine Corps.
Heat triggers Haiden’s seizures, as do visual cues such as geometric patterns and flashing lights. “If he looks out the window and sees patterns on the screen he will slowly jerk his way down to the floor after he’s hit by seizure after seizure,” Ryan Day said. “You don’t realize how many patterns there are in the world until you’re trying to protect your son from them.”
Mesh on a baby gate had to be wrapped in black linen sheets. Two couches had to be replaced because of their fabric weaves. Every time the Day family goes out they need to have an exit plan in case Haiden starts convulsing.
Ryan Day said he and his wife drew the limit at no more than four medications for Haiden at any one time. And they’ve constantly adjusted the mix of medicines trying to find the most therapeutic ones with least side effects. One drug causes dramatic mood swings, Day said. Another is a culprit, he believes, in stunting Haiden’s cognitive development.
About 18 months ago, Day experienced a night he’d like to forget. Haiden had a high fever, which exacerbates his seizures, and was airlifted to the hospital. His temperature was running 105.6 degrees. To cool him down, which would help slow the life-threatening seizures, Haiden was surrounded by ice packs and laid on a chilled mat.
“He just knew he was cold, scared and miserable and I had to physically hold him down on the mat all night long. He begged me all night to let him up off that bed. Every couple minutes he’d say ‘pease, pease, pease.’ It was the worst night of my life and that is what I’m trying to fix, what I’m trying to avoid.”
Dr. Ian Miller, Haiden’s neurologist, said there’s no solid scientific evidence that marijuana is a good treatment for Dravet syndrome, or about how it works to calm seizures. But, given anecdotal reports that it’s been almost a miracle treatment, Miller said, people should be open-minded about it.
For kids who have exhausted all the conventional treatments, marijuana is “within the realm of think-ability because we are desperate to help these kids,” said Miller, Director of Neuroinformatics at Miami Children’s Hospital.
It won’t cure Haiden’s condition because it is due to a mistake in his DNA, Miller said. But Miller said he doesn’t have very serious concerns about side effects because after widespread use by people it appears marijuana’s chief effects are lethargy, apathy and increased appetite. “These are often distant concerns for children with severe epilepsy, and medications we use routinely have known risks that are potentially more serious,” Miller said.
One ounce for $300
Shortly after the Days moved west, Dr. Sanjay Gupta, CNN’s top medical correspondent, hosted a special about the calming effects of high-CBD pot on children with epilepsy.
Around that time Ryan Day began his quest to have Haiden authorized for medical marijuana in Washington.
No doctor he called in the Puget Sound area would do it. He tried a clinic that specializes in medical-marijuana authorizations. No luck.
Eventually, a sympathetic naturopath agreed to see Haiden, in part because her daughter was on a special-needs cheerleading team with a girl who has Dravet syndrome.
Day said his first visit to a dispensary was surreal. He brought Haiden because he had to. He saw jar after jar of strains with names like Purple Urkle and AK-47. “Those are names for comic books, not medicine” he said.
He bought an ounce of Sour Tsunami #3. It cost $300.
Day proceeded to turn the dried flowers into a concentrated extract. He diluted that with coconut oil and took it to a lab to test its potency. Then he started adding a little to Haiden’s applesauce.
He tested the medicine by holding Haiden in front of a window screen. He felt only one moment when Haiden might have twitched.
“I was like ‘Eureka, we did it,’ ” Day said. Then he realized he was almost out of medicine. The ounce amounted to a week’s supply. That meant Haiden’s medicine could cost his parents roughly $15,000 a year, out of pocket, because insurance wouldn’t cover a federally prohibited drug. “That’s when we said we’re going to have to start growing this stuff.”
Day’s parents had no qualms about helping him buy growing equipment. “To me it’s money well spent. I can’t see anything wrong with what they’re doing,” said Tom Parkin, Ryan Day’s stepfather and a retired police officer. “And I don’t know many cops who would have a problem with what Ryan’s doing. Obviously, they’re not trying to get the kid high.”
Day ordered $2,300 worth of lights, fans and other gear. He got a couple plants from another parent growing for his child. He potted his “girls” — as most growers refer to their all-female plants. But one night Day discovered his soil was acidic. He turned to the Internet for a solution and read that baking soda would correct the problem. That was wrong. The plants died. He’s trying again.
Day has several problems with the dramatic changes recommended for medical-marijuana by state officials last month, starting with the proposed ban on home-growing and collective gardens, a way for patients to pool their growing ability.
“If there is no home growing and no collective gardens where people can chip in, most parents are priced out of this,” he said.
The proposed cut in patients’ 60-day supply from 24 ounces to three ounces also troubles him. Day notes that for every pound Haiden gains his dosage needs to increase. “If my son was twice as heavy he’d need two ounces a week. That’s the entire take-home pay for some people,” he said.
Day also opposes the shift of medical patients to state-regulated recreational pot stores, scheduled to open by next summer.
“You’re going to have a recreational market much larger than the medical market with cash to burn,” Day said. “It’s quite possible patients won’t be able to find what they need and if they can, they may not be able to afford it.”
He plans to make his first public statements about the recommendations at a Wednesday public hearing at St. Martin’s University in Lacey.
Sen. Jeanne Kohl-Welles, D-Seattle, was the prime sponsor of a 2011 bill that would’ve put the medical system under tighter rules. Kohl-Welles said she wants to include some of Day’s key points in revisions to the medical system.
“One is that home grows should continue by the patients or by designated caregivers, in this case by the boy’s father,” Kohl-Welles said.
Kohl-Welles stressed, though, that her own proposals are still being refined.
“The main thing is someone like this little boy should be able to get medicine that helps him affordably and with relatively easy access and I’m particularly concerned about patients in rural areas,” she said.
Day said he understands the need for some changes, such as a registry of patients who are growing at home. “I don’t see anything wrong with the state having a list of people growing medical marijuana. The government does need some degree of certainty this isn’t turning into the Wild West,” he said.
He knows parents who disagree, who fear the feds will use a registry to raid the homes of growers.
He said he isn’t afraid.
“They’re not coming after us,” he said. “We are a PR nightmare for anybody that comes after us, because we’ll be on CNN for growing a form of marijuana that won’t get anyone high.”
Bob Young: 206-464-2174 or firstname.lastname@example.org