Pubdate: Tue, 11 Feb 2014
Source: Philadelphia Inquirer, The (PA)
Copyright: 2014 Philadelphia Newspapers Inc
Contact:  http://www.philly.com/inquirer/
Details: http://www.mapinc.org/media/340
Author: Jan Hefler

PARENTS' POT PRODUCTS FOR ILL CHILDREN

While Some Plan Moves Out of N.J., Others Make Oils, Wait for
Dispensaries to Offer More Ways to Ingest.

Tina DeSilvio is so determined to give her teenage daughter marijuana,
she is mixing cannabis buds with 180-proof alcohol and letting the
concoction evaporate into a sticky, olivegreen substance to add to
coconut oil.

Jenna, 14, cannot smoke marijuana, but she can swallow a
half-milliliter of the oil - a few drops - when it is stirred into
applesauce or yogurt four times a day.

"Don't I sound like the mother of the year?" DeSilvio asks, chuckling.
Her yellow kitchen counter displays a minutely calibrated scale, a
dropper, a 9- by 11-inch glass baking dish, and a clear, tightly
sealed plastic container of pungent medical marijuana.

DeSilvio, who once sat on the Franklin Township school board, says she
will do whatever it takes to control Jenna's frequent and sometimes
violent convulsions. Jenna, who wears a pink helmet, already takes two
prescribed narcotics and as well as a third drug to treat a genetic
brain disorder.

DeSilvio, a high-energy woman with two daughters and a quick laugh, is
among more than a dozen parents in New Jersey who have bought cannabis
for their children over the last three months, operators of the
state-licensed dispensaries say. The children hold IDs issued by the
state Health Department. But only the smokable type of marijuana is
available.

While some parents are moving to Colorado - where the drug is sold as
an oil, tincture, butter, and other edibles - some of the parents who
are staying are using a 10-step recipe found on Facebook to convert
the buds into an oil.

"It's very detailed and scientific," says Peggy Kerswell of New
Milford, Bergen County, who recently made it for her 9-year-old
daughter, who has autism and epilepsy. "The seizures are awful. And
when you put a child with epilepsy to bed and open the door the next
day, you never know what you're going to face. That's why I feel
comfortable pushing the envelope and trying to help her."

Marijuana is viewed by some as a new wonder drug after reports that a
strain called Charlotte's Web, sold in Colorado, has reduced seizures
in several children.

The parents of New Jersey's youngest marijuana patient are moving
there his month. Brian and Meghan Wilson, the parents of 2-year-old
Vivian, who has life-threatening epilepsy, pressured Gov. Christie
last summer to sign a bill that would lift the ban on edibles and
loosen other restrictions so children could more easily obtain marijuana.

Though Christie signed the bill, other obstacles cropped up, and
Christie said recently that he would veto any other bill that "expands
the program." In October, the Wilsons obtained cannabis from the
Compassionate Care Foundation in Egg Harbor Township, but after they
changed it into an oil, with the help of a CCF expert, they decided
against giving it to Vivian. They said the state Health Department
would not test the oil for potency, which would have helped determine
the dose.

Frustrated, the Wilsons decided to move.

"We're hoping we can come back to New Jersey in a year and a half,"
Brian Wilson said, saying they are not selling their home. By then, he
hopes the state's four-year-old marijuana program is running more smoothly.

There are signs that it is improving overall. Long waiting lists have
evaporated, allowing patients to get an appointment to purchase
cannabis within 48 hours instead of three to six months. Debit cards
also are allowed, replacing cash-only purchases of about $500 an
ounce. Using credit cards is under review.

Three of the six dispensaries planned for the state have opened,
serving 1,000 of the nearly 1,700 patients who registered and obtained
doctors' approvals, according to the Health Department.

"More than 70 pounds of medicinal marijuana have been dispensed," said
Health Commissioner Mary O'Dowd, saying the program has "shown
significant progress." She said the three dispensaries are in
different geographic locations, offering patients a choice.

Last month, an appeals court ordered the Health Department to report
on the status of the three dispensaries that have not yet opened and
on how the program has been implemented. Patients had sued, alleging
that the department set up roadblocks to slow the program. Christie
has said he never would have signed the bill allowing New Jersey to
become the 14th state to have such a program, and he ordered strict
regulations. Since then, six other states have adopted medical
marijuana programs.

While the first dispensary is struggling, the two dispensaries that
opened last year have ambitious plans to expand.

Bill Thomas, the CEO of the Egg Harbor Township dispensary, is hoping
to have a syrup available for children by May. He said he filed an
application with the state in December outlining the dispensary's plan
to produce edibles. "We are waiting for the state to approve the
process ... and manufacturing methods," he said.

The Garden State Dispensary in Woodbridge, Middlesex County, also
plans to offer edibles around the same time, said Yale Galanter, the
facility's lawyer. "We'll have it in liquid or powder form," he said.

Meanwhile, the dispensary plans to require parents to sign a waiver
saying they are aware of the risks of "altering the product" by
turning cannabis into edibles on their own. "We want to discourage
people from changing the product," Galanter said, asking patients to
wait for the edibles the dispensary will produce.

In an e-mail, Donna Leusner, a spokeswoman for the Health Department,
said patients are permitted to make their own edibles. But she later
sent a second e-mail saying the edibles that will be produced by
dispensaries will be tested and safer, and their potency will be
"clearly labeled." She said the department was "working expeditiously"
to get the edibles approved.

Jennie Stormes, who planned to make a tincture for her son Jack, 14,
last week, says waiting is not an option. "My son does not have time
to lose. The drugs he's taken and the disease have done their damage,
and he deserves quality of life," she said, adding he has had two
brain surgeries and been prescribed numerous narcotics for epilepsy.

"It's an extract from a plant," she said, dismissing the notion that
the tincture might harm him.

Stormes, a registered nurse from Hope, Warren County, is the moderator
of the New Jersey Pediatric Cannabis Facebook Group, which recently
posted the oil/tincture recipe after it was circulated among parents
in other Facebook groups used by these parents.

She said about 30 New Jersey parents told her they have obtained or
are applying for cannabis for their chronically ill children.

DeSilvio tried the recipe last month, and has already received a note
from Jenna's teacher reporting that the child was "on fire" and more
energetic than usual. The teacher, however, knew nothing of the marijuana.

DeSilvio is upset over Christie's threat to veto any other bills that
would improve the program. "He sees us as these hippies who just want
peace, love, and happiness," she said. "But I'm just a mom who's desperate."

The last time DeSilvio took up a battle, she successfully fought for a
law to prevent nursery schools from opening inside toxic buildings.
Jenna and her sister, Savannah, 10, had been exposed to hazardous
mercury vapors in the notorious Kiddie Kollege Day Care, a former
thermometer factory, in 2006.

DeSilvio said she will now turn her attention to the marijuana
program. "I'm going to be persistent," she said, mentioning letters
and calls she is prepared to make. "I'm not giving up." 
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MAP posted-by: Jo-D