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State's medical pot law turns child into refugee

In the year and a half since she's been taking marijuana oil, Cyndimae Meehan has gone from having hundreds of epileptic seizures a day to just one or two.

"It's been astounding," said Dustin Sulak, an osteopathic medicine specialist in Falmouth, Maine, who has been the 12-year-old's doctor since 2013.

Now, instead of being confined to a wheelchair and lethargic from strong prescription medications, Cyndimae can walk, climb on playground equipment and interact with others, said Sulak and Cyndimae's mother, Susan Meehan.

The only thing Cyndimae can't do is go home to Montville, unless the state legislature agrees to change the law so minors can be given medical marijuana.

"We would like to bring her home and reunite the family," Susan Meehan said.

In November 2013, she and her daughter moved into a friend's house in Maine, where it's legal to give medical marijuana to minors. The girl has been struggling since she was 10 months old with symptoms of Dravet syndrome that were getting progressively worse, her mother said, and none of the conventional medications she had tried was helping.

"There were no other options for her," Meehan said. "She was getting so weak" from the constant seizures.

Cyndimae's neurologist at Tufts Medical Center in Massachusetts suggested giving medical marijuana a try, but the 2012 law legalizing medical marijuana in Connecticut restricted the drug to those over 18. That led Susan Meehan to decide that she and her daughter had to become medical refugees, leaving their home state for Dixfield, Maine, where they had a place to live with a friend and a legal supply. Her husband, Robert, remains in Montville with the couple's three other children, enabling them to stay active in their schools and as members of the Mohegan tribe.

"It's been challenging to maintain two households," Susan Meehan said.

At the Meehans' request, Rep. Kevin Ryan, D-Montville, introduced a bill in the current session to lift the age restriction on medical marijuana. It is pending in the Public Health Committee. Susan Meehan said she's eager to testify when it comes to public hearings.

Ryan said when he heard the Meehans' story, he was eager to do what he could.

"I don't know of any other medication that we legally limit to a certain age group," Ryan said.

Mary Anne Meskis, executive director of the Dravet Syndrome Foundation, said other families around the country whose children have the condition have also moved to states where medical marijuana is legal. The foundation, however, is not taking a position on the Connecticut bill, citing a restriction on lobbying by nonprofits. The foundation is based in West Haven.

"There is still much to learn about the role of medical marijuana in treating Dravet syndrome, and the results thus far have been variable from patient to patient," she said in an email message. "There certainly are many patients in our community whose families have moved to a legal state in order to allow their child to try this treatment option. Dravet syndrome is a catastrophic and chronic condition, and children get very little relief from seizure activity. As such, families are always looking for alternatives or new treatment options that might offer their child some relief."

For 18-year-old Holden Rupert of Salem, Mass., that relief was almost instantaneous, his mother, Andrea Rupert, said. For the past year, Holden, who also has Dravet syndrome, has been taking medical marijuana through a research trial.

"He had gotten to the point where he was very violent," she said. Now, she said, "he's very calm, hardly ever aggressive. He sleeps at night now, and smiles and recognizes people. What (medical marijuana) does for the nervous system is just amazing."

Connecticut, she said, should "do the right thing and be a leader" by ending the age restriction on medical marijuana.

Cara Tarricone of North Windham agrees.

Her 7-year-old daughter, West, suffers from another form of epilepsy, Lennox-Gastaut syndrome, that also causes frequent seizures. Cara and her spouse, Diane Tarricone, have considered moving with West and their son, Blake, to a state where medical marijuana is legal.

"I have friends who've moved to Colorado to get medical marijuana, and I've seen all the success they've had," she said. "But we couldn't afford to move, and splitting up the family wasn't doable."

When Ryan's bill goes to public hearing, Tarricone plans to testify.

"Absolutely, we want this to be legal for our children," she said. "Between doctors and parents and growers, we know what we're doing."

Susan Meehan said when she first started giving her daughter medical marijuana, she purchased it from one of Maine's dispensaries at a cost of about $300 to $500 per month. That might sound like a lot, she said, but not when compared to the prescription pharmaceuticals Cyndimae had been taking, which were costing close to $2,000 per month. Plus, she said, those drugs weren't working well. Her daughter used to need hospitalization every three to four weeks, she said, but in the 18 months she's been taking medical marijuana, she has only had to be hospitalized three times.

Once Meehan and Sulak were confident they had found the right dose from the various strengths and formularies available through the dispensary, Meehan decided to start making the medication herself. Maine's marijuana law allows an individual to grow their own once they're approved as a caregiver, she explained. Using a network of grow lights, she set up a cultivation area in the basement of the Dixfield home. Between the additional costs for electricity and organic fertilizers for the plants, she figures she's spending about $200 per month to produce the drugs that have been a godsend for her daughter.

Following a process recommended by Sulak, Meehan distills raw marijuana leaves into an oil that she gives Cyndimae orally once or twice daily. She takes it to a laboratory periodically to test the oil to ensure it's the correct potency.

"As soon as we found the right kind, her improvement was almost overnight," she said.

Sulak said the medically active chemicals in marijuana, cannabinoids and tetrahydrocannabinoids (THC), work on specific receptors in the brain.

"It works at a sub-cellular level, to respond to toxicity or stress development," he said. "But not all of its actions have been fully explained."

He said there is very little scientific data verifying the effectiveness of medical marijuana on human subjects, "but there is a large body of animal research."

He believes medical marijuana could be effective for other conditions, including cerebral palsy and autism, and that the Connecticut General Assembly should lift the age restriction.

"This is a quickly emerging field of medicine that can potentially solve a lot of chronic disease states," he said. "Doctors should decide who should use this medication, not legislatures. The science is evolving so quickly, much more quickly than legislatures can keep up with it."

j.benson@theday.com

Twitter: @BensonJudy

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