Pot for kids? Parents say it's good medicine

Bill Laitner | Detroit Free Press

FLINT, Mich. — In nearby Grand Blanc Township, a family gives daily doses of olive oil infused with medical marijuana to their 6-year-old daughter with a life-threatening seizure disorder.

After years of seeing her suffer, the girl's constant seizures all but disappeared after she began swallowing the oil in January, her parents said. They turned away from their child's regular doctors and found two physicians willing to sign their state application.

Michigan allows medical marijuana for seizure disorders. Yet, these parents still skirt state law and a court ruling that say Michigan patients must smoke their medical marijuana.

Some parents of children with autism also have been fighting to change state law to allow using medical marijuana to treat the disorder. Some say they're looking for treatments to take the place of prescription drugs that can have strong side effects.

Across the state, a small but growing cohort of parents of children with severe, debilitating conditions feel hamstrung by Michigan's laws, regulations and court rulings that govern the pediatric use of medical marijuana.

"A lot of these kids are fighting for their lives," said Robin Schneider, legislative liaison for the National Patients Rights Association, a statewide non-profit group with an office in Grosse Pointe.

Legislation that would amend Michigan's 6-year-old medical marijuana act and open up treatment to more children has stalled in the past. There are several hearings scheduled this summer, offering hope for parents who want treatments expanded beyond smoking and the list of approved disorders broadened.

Some critics who oppose medical marijuana contend it's simply a ploy to legalize marijuana use.

But the American Academy of Pediatrics has joined with a new nonprofit group called SAM (Safe Alternatives to Marijuana) in opposing "the further legalization of medical marijuana."

Instead, they'd expand research into potential therapies "consistent with the FDA approval process," according to an academy position paper published March 1 in the journal Pediatrics. That means putting medical marijuana through the same kind of lengthy trials required of pharmaceuticals produced by mega-drug manufacturers.

Despite its broad opposition to legalizing marijuana, the position paper acknowledged that marijuana should be an option "for children with life-limiting or severely debilitating conditions" if other therapies weren't working.

Legislative hope

This summer, some parents have several fresh reasons to hope:

■ Hearings in the state House Judiciary Committee are expected within a month for a bill that would allow the use of medical cannabis in non-smoked forms. If a doctor approves, a patient could swallow extracts, apply lotions or inhale heated marijuana vapors from special devices.

Supporters say passage would not only help children with chronic conditions but also seniors and others who want to try medical cannabis — but not if it must be smoked. State lawmakers failed to pass a largely similar bill last year, after hearing last-minute opposition from law enforcement groups.

■ And on Monday, a state panel could approve autism as the latest condition to gain state sanction for treatment by medical marijuana. The Medical Marihuana Review Panel, charged with deciding when to expand the range of allowable conditions, plans to convene at 9:30 a.m. at the Ottawa Building, 611 W. Ottawa in Lansing.

Gaining the panel's approval is no sure bet. Already, members have twice decided — in 2012 and 2014 — against adding autism. Only after a yearlong court battle, which included challenges from the Michigan Attorney's General's Office, did the panel finally accept the submission May 27 of a third petition, said Michael Komorn, a Southfield attorney and president of the Michigan Medical Marijuana Association.

State approval of autism for medical cannabis treatment "would keep parents from getting arrested, or fearing arrest," Komorn said.

Lack of research

As of last week, there were more than 177,000 Michiganders approved to use medical marijuana, with only 197 younger than 18, according to Michael Loepp, spokesman for the Michigan Department of Licensing and Regulatory Affairs.

The big challenge in persuading authorities that marijuana might be good medicine is the lack of research, said Dr. David Casarett, a medical professor at the University of Pennsylvania and author of the newly published "Stoned: A Doctor's Case for Medical Marijuana" (Current Books: 2015). The scarcity of research is acute for pediatric conditions, Casarett said.

For more than half a century, American researchers have found it nearly impossible to study marijuana, he said. States began outlawing cannabis in 1929, just as the alcohol Prohibition era was ending. Once marijuana became illegal under federal law, in 1937, "that meant there's been no federal funding for research," Casarett said.

To write his book, Casarett combined the limited research he found with interviews of patients, doctors and drug-addiction specialists. He concluded that marijuana "seems to work" for nausea, seizures and neuropathic pain, the kind stemming from spinal cord injuries, multiple sclerosis and some strokes.

For parents of children with serious seizure disorders, medical marijuana is "really all they've got right now," Casarett said. He said he thinks the drug is safe for kids if parents administer an extract that is concentrated with a key medicinal compound called CBD, or cannabidiol, and weak in the compound that causes marijuana's "high," called THC.

Bella's big change

A vial of olive oil infused with seizure-calming CBD sits on a coffee table in the Grand Blanc living room of Denny and Ida Chinonis. They receive the compound — priced at $200 a month — at no cost from Nature's Alternative on Detroit's east side, said Adam MacDonald, a partner in the medical marijuana dispensary. Nature's Alternative donates its products to many pediatric patients with life-threatening illnesses, MacDonald said.

Holding her daughter, Bella, in her lap, Ida Chinonis described five years of living with Bella's grand mal seizures, convulsions of thrashing and screaming that would last for hours.

"They were never controlled by pharmaceutical medications," she said. The couple's daughter was born with an abnormal chromosome, causing her to develop Lennox-Gastaut syndrome, a rare form of epilepsy that not only causes frequent seizures but also serious delays in a child's physical and psychological development. At an age when most children are in kindergarten, Bella can barely stand, is far smaller than her peers and says only a couple of words.

Very little that health professionals advised has worked, her parents said.

"The doctors just kept adding more and more meds," trying to block the seizures, which were followed by hours in which Bella lay exhausted in a fetal position, her mother said. The seizures stopped abruptly when Bella turned 2, but they began to return when she turned 3. In January, suddenly, "she seized all of one weekend," her mother said.

Doctors advised the Chinonises to resume Bella's prescription drugs, even though by that time her liver had been damaged by the heavy doses. That's when the family heard about medical marijuana from a TV special hosted by Dr. Sanjay Gupta, the CNN medical correspondent who grew up in Novi and graduated from the University of Michigan Medical School. Bella's doctors weren't happy, her parents said.

"The first thing they said was, it lowers IQ. But that wasn't a factor for us," not in a child whose mental development was utterly submerged by uncontrolled seizures, Ida Chinonis said. She turned to a cousin who works for Iron Labs, a Walled Lake business that tests medical marijuana for purity and potency.

The cousin "held my hand through the whole process" of getting two doctors to sign off on state approval, then finding a source of medical cannabis tailored to Bella's needs, her mother said, sitting in the family's ranch house across from Warwick Hills Golf and Country Club. Nearby were vials of the CBD-concentrated olive oil.

"We just give it to her orally. She comes right up and takes it," Denny Chinonis said. The results?

"Awesome. Before we started, she would literally have screaming fits, all day long, no matter what we did or gave her. Now, she's calm," Bella's father said.

"Her eye contact is getting stronger. Before, when she was on the pharmaceuticals, she was just not there, not showing any emotion," he said, turning to see Bella snuggling in her mother's lap.

"I'm just so happy to see my daughter blossom," he said. The couple has two other children, boys ages 10 and 16, who do not have Bella's disorder. The family wants to see lawmakers pass the bill in Lansing that would legalize their daughter's oral ingestion of medical cannabis.

In May, Ida Chinonis testified in Lansing in support of the bill that would allow medical alternatives to smoking marijuana, sometimes called "the marijuana extracts bill," sponsored by state Rep. Lisa Posthumus Lyons. State lawmakers failed to pass an almost identical bill last year, after law enforcement groups complained that police officers wouldn't know how many ounces of marijuana was in a batch of brownies or a vial of lotion. That issue has been resolved, said Lyons, a Republican from near Grand Rapids.

Sick children "need something edible," Lyons said.

Bella could legally smoke marijuana, her mother said, shaking her head at the irony.

"Then she'd be high, and that wouldn't help her," Ida Chinonis said. For seizures, "they have to ingest it," she said.

Autism advice

In Clinton Township, about 50 miles southeast of the Chinonis family, live the Zahringers, another couple wrestling with how to treat their child's chronic condition.

Dwight and Ixchel Zahringer's son Brunello is going on 4 but has yet to speak. Last fall, his parents heard the chilling diagnosis — autism.

"We've had a hard, fast education in this for the last nine months," Dwight Zahringer said. "Think of it like always being at a rock concert — everything really loud — and then you're trying to have conversations or focus on things but you can't because everything is overwhelming," he said.

The dealings with health professionals form a familiar tale — advice to use powerful prescription drugs that are costly and may have worrisome side effects, the failure to see that those drugs are helping and the decision to stop them.

"One of the drugs they recommended we give to him, one of the side effects is stroke. I'm going to give this to my 3-year-old? And pay $120 for six pills?" said Brunello's father.

Brunello is the Zahringers' middle child of three. His sisters do not have his disorder.

"Even our youngest — she's 2 — she's light-years ahead of him now," Dwight Zahringer said.

Most of their attention has been focused on Brunello. His 36 hours a week of therapy sessions, mornings and afternoons, take place in the family's plush lower level turned therapy center. There, tables, flash cards and color-keyed games set up for their son and his therapists.

Although most of the cost is covered by insurance, they are spending thousands of dollars this year in co-pays and uncovered costs, they said. Still, they aren't seeing the progress they crave for their son. Together, they've been talking to advocates of medical marijuana for autism.

"We've been watching a lot of videos, a lot of documentaries, and we've seen proof that it can help," said Ixchel Zahringer.

"One family had a kid who was very severe" with autism symptoms, "and they started giving him some of that (cannabis) oil, and they saw the child calming down."

Last week, Dwight Zahringer flew to Denver to attend the annual conference of the Autism Society, the nation's oldest nonprofit group devoted to promoting autism education and treatment. His goal was to find an expert who would talk about medical marijuana.

There were none. That fits the overall stance of the Autism Society, said Jim Ball, a behavioral therapist in Princeton, N.J., and executive chairman of the organization, based in Bethesda, Md.

"At this time, we don't support medical marijuana because right now the research basis is just not there," Ball said. He treats children with Applied Behavior Analysis, which he called the standard of care for autism. Applied Behavioral Analysis was a main topic at the Autism Society's convention. And it's the approach that has been time-consuming but of limited benefit for Brunello, Dwight Zahringer said.

So, while in Denver, Brunello's dad began visiting medical marijuana dispensaries, poring over Internet sites, and buying copies of marijuana-themed magazines. He came back to Michigan convinced that he needed to try medical marijuana on Brunello — and soon, because "the specialists keep telling us that most of the brain development is in the first five years," he said.

For now, the Zahringers are giving their son drops of a diet supplement, which they say ducks Michigan's current ban on treating autism with marijuana. The diet supplement contains an extract of hemp, a plant related to but not identical to marijuana. But they are eager to to use full-strength extracts of medical marijuana, those containing CBD. They have been eagerly awaiting the outcome of the latest petition effort to the state panel of experts.

In 2012, the panel voted 7-2 against approving autism, saying the petition lacked sufficient research support. In 2014, panel members declined to review a new petition supported by more research, with state attorneys asserting that the issue had been decided. Now, the Zahringers' hopes are strong for a third petition, submitted after a yearlong court battle to gain reconsideration.

But even if autism is approved in Lansing, parents should not expect to treat just any child with cannabis, said Dr. Harry Chugani, chief of pediatric neurology at Children's Hospital of Michigan, and a national authority on autism.

"The vast majority of kids with autism do not need pot, and I won't sign for it," Chugani said. The drug should be reserved for those with "very bad behaviors, aggression, meltdowns," he said.

'Nothing left to try'

The Autism Alliance of Michigan — a nonprofit group of doctors, therapists and parents — has no official stance on medical marijuana, said cofounder Stephen D'Arcy, 60, of Grosse Pointe Woods. His 32-year-old son has autism, said D'Arcy, an accounting executive and former board chairman of the Detroit Medical Center.

D'Arcy said he thinks that Michigan parents should be allowed "to see whether, under the supervision of a doctor, medical marijuana can be helpful" for a child with autism.

The petition being reviewed Monday by the state panel of experts comes with more than 75 peer-reviewed medical studies, said Dr. Christian Bogner of Birmingham, an obstetrician-gynecologist whose 10-year-old son has autism, and who was instrumental in writing the petition. The studies are not directly about autism but instead for related conditions, or about the symptoms of autism, or using rats, chimps and test tubes, he admitted.

"These studies explain on a molecular level" why cannabis could alleviate symptoms of autism and perhaps even reach its cause, he said.

Prescription drugs suggested for autism by most doctors "are used off-label" — meaning they're approved by the U.S. Food and Drug Administration for other conditions but not for autism, Bogner said.

"So if anybody tells you that cannabis isn't approved for autism, I say nothing is approved.

"These children — for some of them, there's nothing left to try," he said.