December 14, 2013

Maine parents fight to treat sick children with medical marijuana

A low-potency but effective strain from Colorado offers Maine families hope, but tests the legal limits of medicinal pot and highlights how far some parents will go to alleviate the suffering of kids who have epilepsy.

By Mary Pols mpols@pressherald.com
Staff Writer

On a dark night in November, Meagan Patrick drove from her home in Acton with her husband, Ken, and their two children to a medicinal marijuana dispensary in Portland. Ken parked and went in, while Meagan and the kids waited in the car. “It was literally in a back alley,” said Meagan, a 31-year-old third-grade teacher.

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Meagan Patrick plays with her daughter, Addelyn, at their Acton home earlier this month. The baby has severe epilepsy, and the family is taking steps to try treating her seizures with a strain of medicinal marijuana not readily available in Maine.

Gabe Souza/Staff Photographer

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Christy Shake of Brunswick is battling misconceptions about medical marijuana’s use and its effects on her son, Calvin. She’s petitioned the president and lawmakers to remove it from the list of Schedule 1 drugs.

John Ewing/Staff Photographer

Additional Photos Below

Medical Marijuana: Children and epilepsy

Q: How do parents get marijuana for children?

A: The state certifies minors for the same conditions it does adults, which range from cancer to glaucoma and include seizures characteristic of epilepsy. Parents ask their physician to evaluate their minor child and make a recommendation that the child be certified for medical marijuana. The physician makes a referral to Maine’s Department of Health and Human Services. An independent physician contracted by the state then has 10 days to render an opinion. This recommendation is returned to the consulting physician for further consideration and discussion with the parents. According to DHHS, about 20 to 25 petitions from minors are considered annually and about half of those are approved.

 

Q: Do they smoke it?

A: No, they don’t have to and rarely would. But that’s a common misconception. Berwick mother Heather Bowie, who is researching the treatment for her 12-year-old son, Aidan, said when she first heard of medical marijuana as a means to treat his epilepsy, her first thought was that her disabled son couldn’t smoke. She didn’t know yet about tinctures, where the drug is suspended in liquid and can be mixed into food, placed under the tongue or even rubbed into the skin.

 

Q: Will they get high?

A: Not if they’re using a plant high in CBD and extremely low in THC, the psychoactive component that makes people high. “I also had no idea you could just grow out the getting high point,” Bowie said. “So I wouldn’t expect the public to know that and I would expect the sidelong glances if we go ahead with it.”

 

Q: But what will happen to the children?

A: Their seizures could lessen – possibly dramatically, possibly only slightly. Side effects can include lethargy and improved mood and appetite. The long-term effects of giving medical marijuana to children are not yet known.

cannabidiol at a glance

What is CBD?

Cannabidiol is a nonpsychoactive component of the cannabis plant. It has been shown to have a sedative effect and repress convulsions and seizures. It can increase appetite, fight nausea and act as an anti-inflammatory.

What is THC?

Tetrahydrocannabinol is the primary psychoactive component in the cannabis plant. It is what causes hallucinatory effects on the brain and produces the classic “high.”

What makes high-CBD marijuana different?

Charlotte’s Web, the high-CBD strain from Colorado, is 17 percent CBD, and only 0.05 percent THC. Maine growers say they’ve managed to get CBD levels as high as 8 percent, but the THC remains about 5 percent. For perspective, the average THC content of pot in 1980 was 2 percent, according to a Mayo Clinic study. By 1997, the average THC content of pot had more than doubled and by 2006 it was 8.55 percent.

Is the high-CBD strain more expensive than other medical marijuana?

No. Canna-tsu, the 6.66 percent CBD strain Maine Organic Therapy in Ellsworth is selling, is no more expensive than other medical marijuanas; a 2-ounce tincture, which lasts the average patient two weeks, costs $50. But the Patrick family expects to pay between $300 and $500 a month for Addy’s treatment in Colorado. That’s more expensive than her pharmaceutical medications, but primarily because those meds are covered by insurance and the Patricks will pay out of pocket for the Charlotte’s Web.

Just a few months ago, this errand – shopping for medicinal marijuana to treat her baby daughter’s epilepsy – would have been unfathomable.

Ken came out empty-handed. There was plenty of medicinal marijuana available but, as they had suspected, not the kind they were seeking.

So this Monday, Meagan plans to board a flight to Colorado with 13-month-old Addelyn – “Addy” – to begin the process of becoming a resident there, far from family, far from Ken’s job and their woodsy home in southwestern Maine but close to what she believes may be her best hope for her child’s future.

About 100 families nationwide have already relocated to Colorado in order to obtain a strain of medical marijuana known as “Charlotte’s Web” that has been shown to be effective in treating children with epilepsy. Originally called “Hippie’s Disappointment” by its growers because of what it lacked in traditional potency, namely the THC (tetrahydrocannabinol) that gives users a psychoactive high, this strain of high CBD (cannabidiol) marijuana was renamed for a little girl named Charlotte Figi. Researchers at the University of Reading in England found evidence that cannabidiol, one of many components in the marijuana plant, can radically reduce the number of seizures in epilepsy patients; it reacts with receptors within the body and works as an anticonvulsant. That was borne out by Charlotte Figi’s case; at age 4 she was having 300 grand mal seizures a week and had run out of pharmaceutical options. In her first week on this cannabis-derived medicine she had just one seizure. Now 6, she is 99 percent seizure-free.

In Maine, medical marijuana is legal, even for minors, provided they pass a certification process with the Department of Health and Human Services’ licensing board. But the nearly two dozen Maine families who want to try it have run into numerous roadblocks.

The first is supply. Charlotte’s Web, developed by Colorado grower Josh Stanley and his five brothers – widely referred to as the Stanley brothers – is not technically available in Maine, as the Patricks found. But Charlotte’s Web rumors fly through this network of parents, many of whom originally connected on a private Facebook group called Maine Epilepsy Parents United.

Some say there’s something just like it, or close enough, or that a Maine grower might be secretly working from a clone of the Stanleys’ plants. Others whisper that someone in California might be willing to mail another high CBD-strain to Maine. Or that maybe the high-CBD strain isn’t needed at all, that maybe the plant in its raw form could yield a medicine just as helpful. In this world where mothers ruefully count up the number of pharmaceutical options that haven’t worked on their kids and dread the possible side effects of whatever comes next, nothing seems certain but the desire to give a natural product a try.

The second major obstacle is legality. It’s not as simple as going to Colorado to pick up some clones of the Stanleys’ plants and bring them back to grow in Maine.

Under federal law, marijuana is still illegal and classified as a Schedule 1 drug without any known medical benefits and with potential for addiction and abuse; it’s in the same category as heroin and LSD. Anyone who imports it across state lines risks being charged with drug trafficking.

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Additional Photos

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Meagan Patrick gives Addy a gentle caress at their Acton home earlier this month. The strain of medical marijuana that Patrick wants to treat Addy’s epilepsy with is called Charlotte’s Web and is grown in Colorado. One problem in obtaining it is that it’s a federally classified Schedule 1 drug that can’t legally be taken across state lines.

Gabe Souza/Staff Photographer

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Meagan Patrick holds Addy’s feet as she lays her down to rest. Addy was diagnosed with epilepsy at 4 months, and both her seizures and medications slow her development.

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Thirteen-month-old Addy Patrick’s medications are kept in a lockbox so her 4-year-old brother can’t get into them. Addy’s parents and others whose children have epilepsy are ‘desperate’ to find a medicine that’s natural and has few if any side effects.



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