Pubdate: Sun, 15 Feb 2015
Source: Middletown Press, The (CT)
Copyright: 2015 The Middletown Press
Author: Ed Stannard


Cyndimae Meehan, 12 years old, was suffering as many as 2,000 
seizures a day from a severe form of epilepsy known as Dravet's syndrome.

The condition, which she developed at 10 months old (one day after 
she had been vaccinated, though the connection is unknown) jerks her 
body violently, over and over. The only thing that has helped has 
been marijuana, which she consumes in oil form.

The youngest of four children, Cyndimae and her mother, Susan Meehan, 
moved to Maine to take advantage of that state's medical marijuana 
program, which, unlike Connecticut's, allows patients under 18 to use cannabis.

For Meehan, it's an important issue for the many children with severe 
epileptic disorders, many of whom don't live to adulthood.

Meehan has asked her state legislator, state Rep. Kevin Ryan, 
D-Montville, to propose a bill that would give children under 18 
access to prescribed medical marijuana. His proposed House Bill 5892 
is titled "An Act Concerning the Palliative Use of Marijuana for Children."

"I'm trying to be supportive with her and the needs of her child," 
Ryan said, but he said he was unsure about the fate of the bill, 
which would have to go through a hearing in the Public Health Committee.

Meehan said state Sen. Joseph Crisco, D-Woodbridge, vice chairman of 
the committee, also has expressed support. Crisco could not be reached.

Cyndimae's journey has been long and torturous. She had tried 23 
antiepileptic drugs, some of which had severe side effects, Meehan 
said, leaving the girl "near comatose at times." A special 
anti-epileptic diet - high in fats, low in carbohydrates - worked 
well but only for a couple of years. She then had a vagal-nerve 
stimulator implanted, which reduced the number of seizures she 
endured by 90 percent - still not enough to allow Cyndimae to live a 
normal life.

By the end of 2013, "she was just losing ground," Meehan said. She 
could barely eat or walk. "We were losing her fast," she said.

So Meehan moved with her daughter to Dixfield, Maine, leaving her 
husband and three older children at their home in the Oakdale section 
of Montville. Her husband is a firefighter/EMT in Rhode Island. Susan 
was a cultural educator for the Mohegan tribe, of which the Meehans 
are members.

In Maine, a state that Meehan said has been "attracting refugee 
families" seeking medical marijuana, Cyndimae and her mother live 
with a medical marijuana caregiver, who is allowed to grow cannabis 
plants under state law. Meehan grows the plants for her daughter and, 
using 190-proof alcohol, which draws the oil out of the plant, 
creates tinctures high in a cannabinoid called THC-A. It's then 
diluted in coconut oil, which Cyndimae drinks.

That forms Cyndimae's maintenance dose, but at times she also needs a 
"rescue formulation" of "very potent active THC," which is applied 
directly to her gum line or rectally. "It's unbelievable," Meehan 
said. The seizure "stops within 15 to 20 seconds. It's pretty phenomenal."

"She still has some seizures," Meehan said, but went from Jan. 21 to 
Feb. 7 "with absolutely no seizures, which was a huge run for her."

Meehan said she's also fighting to allow medical marijuana in 
hospitals, where it is not allowed.

When Connecticut passed its medical marijuana program in 2012, Meehan 
said she was "ecstatic" until she saw the 18-year-old age limitation, 
which left her "devastated ... crushed." Epilepsy is one of 11 
conditions for which prescribed marijuana is allowed in the state.

Meehan says getting the age limit changed in Connecticut is "my first 
big future accomplishment." She also wants expansion of the 
four-plant limit that registered medical marijuana patients may grow 
in this state without penalty.

"I'm very hopeful that they'll see the common sense of allowing 
pediatric patients to use it," she said of legislators in 
Connecticut, which she said is one of just a few states with such an 
age restriction.

Meehan said having cannabis available to treat severe illnesses like 
Cyndimae's is important for afflicted children, many of whom "will 
never live to see adulthood. ... We've had more friends lose their 
children waiting for legalized marijuana in other states."

As for Cyndimae, "I don't think [she] would be alive right now," if 
it wasn't for marijuana.

Cyndimae's doctor, Dustin Sulak of Falmouth, Maine, said she has 
thrived on cannabis and is "an incredible case for a lot of reasons: 
How she's developed since she's stopped seizing ... It's like an 
explosion of health bursting out of her."

She's grown by several inches and developed in other ways as well. 
"Now she's coloring, painting inside the lines," which wasn't 
possible for her before, he said.

"There's very little human research" of medical marijuana's efficacy 
"and even less on children," Sulak said. "In my practice right now, I 
have about 40 cases and we're having good results with about half of 
them," Sulak said. All 40 "have failed conventional seizure treatments."

The other unusual factor in Cyndimae's treatment is that she is not 
using CBD, the chemical in marijuana "which is what all the news buzz 
is about. A lot of the stories out of Colorado have demonized THC and 
glorified CBD." But Cyndimae's case shows medicine should be "looking 
for medicine in the whole plant."

The raw form of THCA that Cyndimae uses is "non-psychoactive so it 
doesn't get her stoned at all," he said. But there's still a "very 
minimal understanding of how it works," he said.

The Dravet Syndrome Foundation, which is based in West Haven, has 
only issued a position paper on CBD, calling for more research, not on THC.

The pediatric community has been cautious about medical marijuana. 
The American Academy of Pediatrics recently issued a policy saying it 
should only be used when there is no other treatment option and only 
for severely ill children.

However, the AAP recommended taking marijuana of f the federal 
Schedule 1 list of narcotics so that it can be studied more easily.

Cyndimae has been "one of the best examples of success," Sulak said, 
"because she's also been able to stop several of the medications" 
she's used, relying now only on cannabis.

He said those on CBD "start reporting things like better cognition, 
better alertness," which is the "opposite of other seizure 
medicines," Sulak said. "The other thing is there's simply nothing else to try."
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