Pubdate: Mon, 23 Feb 2015
Source: Day, The (New London,CT)
Copyright: 2015 The Day Publishing Co.
Contact:  http://www.theday.com/
Details: http://www.mapinc.org/media/293
Author: Judy Benson

STATE'S MEDICAL POT LAW TURNS CHILD INTO REFUGEE

Child Lives in Maine With Mom Because She's Too Young to Use Drug 
Legally in Connecticut to Treat Her Epileptic Seizures

At the family's 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.

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 tet-rahydrocannabinoids (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."
- ---
MAP posted-by: Jay Bergstrom