Pubdate: Tue, 04 Jul 2017
Source: Hartford Courant (CT)
Copyright: 2017 The Hartford Courant
Author: Vinny Vella, Photos And Video By Lauren Schneiderman


There are good days for West Tarricone. Days when she can laugh and
live like any other 9-year-old. Days when she can play with her
brother, Blake, and watch "The Ellen DeGeneres Show" on her iPad.

But there are also bad days. Days when her body weathers 100 seizures.
Days when it has closer to 1,000 - some lasting more than 90 minutes.

Lately, she's been having more good days thanks to Connecticut's new
experiment with medical marijuana.

Doctors diagnosed West just after her first birthday, not long after
her mother Cara Tarricone noticed she had been jerking oddly. Two
weeks before they learned West had intractable epilepsy, she had a
grand mal seizure.

In the years since, West has tried a battery of nearly two dozen
medicines, but just one has brought her some comfort - cannabis oil,
which is derived from the marijuana plant.

"Without it, we'd be in the hospital, we'd just live there because
we'd have to be controlling bigger seizures all the time," Tarricone

West takes the cannabis oil daily, in addition to four pharmaceutical
medications. Tarricone says she's "pleased" with the daily medication,
and has seen a decrease in some seizure activity.

But the medicine's most profound effect comes when West's seizures
flare beyond control. When that occurs, Tarricone rubs a different
concentration of the oil into her daughter's gums as a "rescue
medicine." Within a minute, the more intense symptoms subside. Her
tightened muscles slacken. Her breathing regulates.

Before the oil, the family had to rely on pharmaceutical rescue
medicines. When they didn't show signs of working right away,
Tarricone would have to call for an ambulance.

During intense seizures, they usually didn't work.

"I said immediately, this is a natural option, and I want this for my
child," Tarricone said. "Something that could eliminate a lot of extra
pharmaceutical medication in her system and be so simple and
straightforward? This is something we needed for our daughter."

West Tarricone, 9, was admitted to Connecticut Children's Medical
Center in Hartford for 16 days following a massive seizure in
September 2016. As her seizures continued, she was held for
observation while her parents and the neurology team tried different
medications within the safety of the hospital.

The state legislature passed a bill approving cannabis as a palliative
treatment for childhood seizure patients in May 2016, but the medicine
didn't become available until October, when the law went into effect.

The Tarricones received their first batch for West in March. She is
currently one of less than 50 children in Connecticut utilizing the
medicine, according to the state Department of Consumer Protection.

Getting the medicine was a victory for the family, one of the more
vocal advocates for legalizing cannabis oil.

And as they begin using it, they hope their story inspires a greater
understanding and wider acceptance of a substance that could improve
the lives of other children.

West's condition is so unstable that Tarricone had to give up her job
to care for the girl. Her wife, Diane, works three jobs to support the

Moving to another state, like California, where medical marijuana is
more readily available, was not an option. Their son, for one,
couldn't bear the thought of leaving his friends and school, she said.

Besides, the Tarricones are attached to their neurologist at
Connecticut Children's Medical Center, Dr. Jennifer Madan Cohen.

Attached to the point where leaving her care was a risk they wouldn't
take. So if they couldn't go to the drug, they'd find a way to bring
it to them.

Tarricone lent her voice to the movement of parents seeking medical
marijuana for their children. It was a fledgling group in 2015, when
the first bill failed in the state legislature.

But a year later, they were ready, Tarricone said, adding their
testimony to a groundswell of support for the legislation.

"We shared stories and made it personal, how it would affect us, how
it would affect our children," she said. "I truly think that gave us
the momentum. In that year, we had enough opportunity to educate
legislators personally as to what the medication is, how it worked,
how effective it could be, and that parents should really be the ones
making that decision with their medical care providers."

But when they initially broached the subject with Madan Cohen and the
other members of West's medical team, they were somewhat skeptical,
Tarricone said.

"They just didn't know that this was something parents were pursuing,
and moving to other states to pursue," she said. "But I kept saying,
'This is what's happening, let's talk about this more, I want to
continue this conversation.'"

"And I didn't let it go," she added.

Madan Cohen has treated West since her diagnosis. In that time, she's
seen her try a bevy of medicines for the seizures that plague her.

"You name it, shes been on it," Madan Cohen, the medical director of
the hospital's epilepsy center and clinical neurophysiology lab, said
in her office recently. "If there's a medicine I've had, she's tried

Because of that, she doesn't see the Tarricones' interest in medical
marijuana as "irrational."

"They've seen their child have pretty severe seizures and not have
control with the various treatments they have," she said. "So I've
never discouraged a family's want to try this treatment, but we have
to decide when it's the right time to try something."

She acknowledged that West was at a point in her life where trying
medical marijuana was an attractive option.

But when it comes to the treatment's effectiveness, Madan Cohen is
unable to give a definite answer. And it's not just because the
utilization of the oil is still relatively new for the adolescent.

Medical marijuana is unique in the way it's dispensed. Normally,
medication requires FDA approval before it can be prescribed to
patients. However, because individual states are legalizing marijuana
for medicinal purposes, patients seeking the drug are circumventing
that approval process, receiving a substance that the federal
government considers illegal - and largely untested as a drug.

Still, within the medical community, there's a body of evidence
supporting the benefits of using cannabidiol, a chemical compound
found in marijuana, in treating seizures. Evidence like clinical
trials sponsored by pharmaceutical companies with deep pockets. Madan
Cohen herself is involved in one such trial, the goal of which is to
accumulate enough evidence to one day seek FDA approval.

But the products available in Connecticut are not purely cannabidiol.
They also contain tetrahydrocannabinol, another chemical component
found in marijuana known to be psychoactive, in various

Trials studying the effectiveness of THC, or any other component of
marijuana, can be difficult to get clearance for, according to Dr.
William Zempsky, a pediatrician with Connecticut Children's Medical
Center who sits on the board of physicians for the state's medical
marijuana program.

For one, limited availability means that different physicians work
with different strains of the plant. And there seem to be multiple
variants for every study: how the marijuana is consumed and the
conditions it's used to treat, for example.

"We're dealing with a different combination of drugs that people
study," Zempsky said. "It's really hard to take all that information
and go forth and say 'Medical marijuana works for x condition,'
because we're not talking about the same thing, and to drill it down
to an individual patient is more complex."

Connecticut has a history of such studies. St. Francis Hospital and
Medical Center sought to study marijuana as an alternative to opioid
painkillers. Yale University has sponsored similar trials in the past,
according to Zempsky.

And Connecticut Children's is laying the groundwork for a study of its
own, using data from its patients to see the long-term effects of
medical marijuana.

The medications that West uses, for example, are low doses of THC.
Just enough to treat her seizures and keep her comfortable.

The family initially tried cannabidiol medication, Tarricone said. It
made West's seizures even worse.

Still, THC's effectiveness hasn't been proven clinically, Madan Cohen
said. Instead, physicians rely on anecdotal evidence, like the
Tarricones' positive experience, when informing prospective patients.

Cara Tarricone displays the label for the medical marijuana that her
daughter, West, is taking. The label shows the concentration of the
different cannabinoids included in the medication.

"I think there's enough people who reported it that that's some level
of data," Madan Cohen said. "But it's just not the same level of data
as a randomized, controlled trial and the things the FDA requires to
get a medicine approved as a treatment."

Trials help determine crucial medical information, like the drug's
side effects, dosing recommendations and interactions with other medicines.

Without them, physicians treating patients with medical marijuana have
to undergo some trial and error, seeing what works best in their
individual case.

"My advice to parents - and this is what I told West's parents as well
- - is that you have to think of it as you're doing your own clinical
trial on your child," she said. "We don't know what the outcome is
going to be, we don't know if they're going to respond, we don't know
what the side effects are.

"But there are some families who feel that risk is acceptable compared
to what is going on in the child's life medically at the current
time," she added.

FDA approval would have the additional benefit of making the medicine
more affordable: All approved drugs have to be covered at least
partially by medical insurance.

If for no other reason than that, Madan Cohen is encouraging more
trials, more testing from policymakers both here and in Washington.

"Now, people are desperate, and they feel like the government is just
getting in their way, as opposed to the idea that the government is
protecting them from potential harm," she said. "And I think the
intentions are good to make sure that something doesn't have a lot of
side effects."

Zempsky said he understands the frustrations that some parents may
feel, especially if they see medical marijuana as an effective
alternate remedy. But, still, he cautioned against universal adoption
of the drug too early.

"While I've seen a lot of impressive outcomes with medical marijuana,
it's not as good as everyone says it is," Zempsky said. "We have to be
careful of letting things get out too far ahead of us, because we
don't know long-term risks, especially for child patients."

He's not outright opposed to prescribing the drug for children
suffering from certain conditions, like epilepsy. He simply argues
that there isn't enough data out there to know how adolescent use of
medical marijuana affects patients later in life.

"If you give medical marijuana to someone who's 13, you need to know
what they're like when [they're] 40," he said. "That takes time, and
there's no way to expedite that. So we won't be comfortable for years
in the pediatric world to open the floodgates, even if we're
comfortable in the adult world."

But research is needed. And Rep. Gail Lavielle understands that.

The Republican from Wilton became a vocal supporter last spring for
medical marijuana in the state - both as an elected official and a

"When you're a parent, you want to do everything you can to help your
child. You're not going to put your child in danger voluntarily," she
said. "So you must be pretty desperate to try and find something to
help them if you're willing to consider something that you're not
totally sure of the risks of.

"So I listened to this, and I decided it wasn't up to me to decide,
that it would be supreme and egregious arrogance to think otherwise,"
she added.

Lavielle stresses that she's not "pro marijuana," especially when it
comes to recreational use. But in conversations with her constituents
who have epileptic children, she realized the government shouldn't
create unneeded roadblocks.

"My stance is that it's not up to me as a legislator, as a member of
the government, or to the legislature itself to tell people whether
they can try something that they think might work when their child has
a very grave disease," she said.

Her colleagues agreed: The bill passed 129-13 in the House and 23-11
in the Senate in May 2016.

State Rep. Gail Lavielle, R-Wilton, said that even though she's not
"pro-marijuana," she supported legislation that allows children with
certain conditions or diseases access to medical marijuana.

Meanwhile, away from the Capitol and long-winded debates over policy,
children like West Tarricone live the reality of that decision, their
families hoping for continued success with treatment.

The 9-year-old from Windham doesn't let anything slow her down. Her
personality is bright and bubbly. She's affectionate, grabbing the
hands of new acquaintances as she leads them around her living room.

Tarricone says her daughter loves to laugh, especially at the
pratfalls and tumbles her twin brother makes while they play.

The levity helps, Tarricone said. It takes the family's collective
attention away from the epilepsy. So does the cannabis oil.

What started as a seeming long shot, an idea that Tarricone first had
three years ago, now sits in the family's medicine cabinet, ready to
soothe the seizures when they overtake her daughter.

"If you were in our position and you were running out of all
pharmaceutical options, and here's this hope at the end of a really
bad tunnel for a child who's going to prematurely die, you're going to
know," Cara Tarricone said.

"Because when you look in your child's eyes, you know you have to do
everything possible to help them."
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