Parents: let children with seizures take marijuana
Changes sought to marijuana law
Updated 6:13 pm, Wednesday, April 22, 2015
Lindsey Clark, of Darien, thinks medical marijuana could make her 7-year-old twin sons, Jeremy and Miles, less reliant on pharmaceuticals that have undesirable side effects.
For Dana Haddox-Wright, of Wilton, getting her daughter, Ella Wright, 5, into the state's medical cannabis program could mean fewer trips to the hospital to treat epileptic seizures that can last as long as two hours.
But current state law does not allow children under 18 to take the drug. So Jeremy, Miles and Ella, who all have a rare childhood epilepsy known as Dravet Syndrome, cannot be prescribed marijuana products that seem to help youngsters in states where it is allowed.
Clark, Haddox-Wright and other parents are hoping the General Assembly will change that and approve a bill allowing children to be treated with marijuana oils that have been found to reduce the profound, potentially fatal seizures associated with Dravet's.
"I think it's important that we get the opportunity to try," Clark said. "The pharmaceutical drugs don't seem to help. Medical marijuana definitely can't be worse than what they're on now."
State that allow minors to be treated with the marijuana
Alabama, California, Colorado, Florida, Iowa, Mississippi, Missouri, North Carolina, Oregon, South Carolina, Utah, Washington and Wisconsin.
Source: National Conference of State Legislatures.
Expanding the program to kids could be a tall order in a state that's only a few months into its medical marijuana experiment. Thirteen states allow minors to be treated with the drug.
Connecticut's Department of Consumer Protection, which administers one of the most restrictive programs in the nation, has asked the Legislature to eliminate the age restriction as part of a bill that would provide for licensing of laboratories and research programs, and allow for the delivery of the drug to hospitals and hospices.
Deputy Consumer Protection Commissioner Michelle H. Seagull, who helped write state regulations following the passage of the 2012 medical cannabis law, recently told lawmakers that evidence is emerging on the drug's success treating seizures, particularly strains of marijuana with small percentages of the mind-altering compound called THC and larger levels of a chemical called cannabidiol, an anticonvulsant.
"We are hearing compelling stories about patients under 18 with seizure disorders," Seagull recently told the legislative Judiciary Committee, which had until April 13 to decide whether to eliminate the age threshold. "My expectation is that for the most part, younger children wouldn't be smoking it. They would be taking it in these other forms."
The marijuana prescribed for Dravet's patients is in the form of an oil that's swallowed.
Like liquid Tylenol
Clark and Haddox-Wright are members of an informal support group of parents from Connecticut and Westchester County, N.Y. who occasionally meet for dinner to discuss strategies to help their seriously ill children and to get Connecticut to expand its medical marijuana program.
"It's just a day-to-day kind of thing," said Haddox-Wright, a market research consultant.
Haddox-Wright and her husband Bob Wright, a 37-year-old financial services professional, are attuned to telltale signs of imminent seizures: overheating, dark circles under Ella's eyes, staring straight ahead.
"But if she's at school and it's relatively cool out, she could have a seizure that comes on without any warning," Haddox-Wright, 37, said. "If she's active enough to become overstimulated, there is no warning."
They know all the local EMTs and most of the emergency staff at Norwalk Hospital. Ella, who was diagnosed at 10 months, recently returned from a weeklong hospital stay battling a virus and complications from her medications and diet, which must be free of sugar.
"There are some medications that make it worse," Haddox-Wright said. "She's never had a seizure that stopped on its own. What we do is start giving her rescue meds right when it is happening. We're lucky if it stops before 30 minutes."
Haddox-Wright said cannabis is misunderstood and provokes knee-jerk reactions.
"I think what happens is that when some hear the word `marijuana,' they think the kids will be sitting around getting high," she said. "This is an oil, given like liquid Tylenol, or some have it in the form of a mist or vaporizer. It's going to be like medicine."
Afraid of addiction
Clark, 40, said the disease affects children differently. Miles is also on the autism spectrum and takes medications for symptoms entirely different from his brother, although they both have Dravet's.
In January, the twins participated in a small medical-marijuana trial in Massachusetts, but Clark and her husband, Cyrus, a 46-year-old bartender, were wary of the results. Since it was a double-blind trial using placebos, the Clarks aren't sure if both, or either child, received CBD oil.
"Miles was sleeping all day," Lindsey Clark said, stressing that the trial wasn't a true test, since both boys remained on their daily medications. "We couldn't wean them off, so the side effects could have been from everything together."
The experiment didn't dampen their desire to explore marijuana treatment.
"We thought about moving to Colorado, but the kids aren't in such dire straits, at this point," said the Darien native, who has a close family and support system here. "But I know it's working for so many, so we hope things progress and we'll eventually be allowed to use medical marijuana."
An opponent of marijuana, Sen. Toni Boucher, R-Wilton, said there is a risk of addiction to other drugs if kids are allowed to use it. At a public hearing, she described patients with permanent brain damage, disrupted memory, psychosis and schizophrenia.
"That is something we really need to worry about because it's an issue in our schools and our families," Boucher said. "I've always been supportive of this for people in hospice ... but for someone who has prospects of a better life or recovery, I'm very concerned that this direction that we're taking will, in fact, do more harm than good."
Haddox-Wright was disappointed by Boucher's statements.
"I would love to send her a list of the side effects of the three drugs Ella uses daily," she said. "They are all controlled substances, including Benzodiazepine, that are highly addictive psychoactive drugs. Medical marijuana has no known side effects and we can take them off immediately."
Scientific studies on marijuana therapy have been scant because for decades, testing the substance has been against the law.
But marijuana treatments' positive effects on Dravet Syndrome patients received national attention a couple of years ago when Dr. Sanjay Gupta, a former marijuana opponent, said in a report on CNN that he was convinced of its efficacy. He focused on the case of Charlotte Figi, of Colorado, for whom a high-CBD, lower-THC strain of marijuana nicknamed "Charlotte's Web" was developed.
Paige Figi, the mother of Charlotte, now 8, calls her daughter a "super responder" to medical cannabis when she started hemp-oil therapy nearly three years ago.
"We have a lot of medical refugees, a lot of families, who've come to Colorado," she said in a phone interview, agreeing that each child responds differently to cannabis. But Charlotte's 1,200 grand mal seizures per month have now been reduced to two or three.
"It's not a cure, but it's an absolutely valuable therapy," said Figi, who grew up in West Hartford. She now leads the effort to change national law through the Coalition for Access Now. There is no cure for Dravet's.
"There's no known medical treatment and you have to take all these anti-seizure drugs," she said. "It's life-shortening. I'm not speaking against pharmaceuticals, but it's nice to have other options. It's not that outrageous."
Rep. William Tong, D-Stamford, co-chairman of the legislative Judiciary Committee, said he's now on board too.
"I think there's a lot of support for the bill," Tong said. "Don't forget, I was a `no' vote for medical marijuana. I was a `no' vote for decriminalization. But my feeling is we should give the kids what they need."