Jacob Redmond
Well-Known Member
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 anti-epileptic 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 THC-A 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 off 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."
News Moderator: Jacob Redmond 420 MAGAZINE ®
Full Article: Connecticut bill would allow medical marijuana use for ill children
Author: Ed Stannard
Contact: estannard@nhregister.com
Photo Credit: None Found
Website: The Middletown Press: Breaking News, Sports, Business, Entertainment & Middletown News
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 anti-epileptic 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 THC-A 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 off 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."
News Moderator: Jacob Redmond 420 MAGAZINE ®
Full Article: Connecticut bill would allow medical marijuana use for ill children
Author: Ed Stannard
Contact: estannard@nhregister.com
Photo Credit: None Found
Website: The Middletown Press: Breaking News, Sports, Business, Entertainment & Middletown News
