Pubdate: Sun, 16 Feb 2014
Source: Times-Tribune, The (Scranton PA)
Copyright: 2014 Townnews.com
Contact:  http://www.thetimes-tribune.com
Details: http://www.mapinc.org/media/4440
Author: Jan Hefler, the Philadelphia Inquirer

IF YOU CAN'T SMOKE IT, EAT IT

Parents Are Creating Marijuana Usable for Sick Kids

TRENTON, N.J. - 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, 
olive-green 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?" Ms. 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.

Ms. DeSilvio, who once sat on the Franklin Twp., N.J., 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 a third drug for a genetic 
brain disorder.

Resourceful families

Ms. 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 past 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, N.J., 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."

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 this month. Brian and Meghan Wilson, the parents of 2-year-old 
Vivian, who has life-threatening epilepsy, pressured Gov. Chris 
Christie last summer to sign a bill that would lift the ban on 
edibles and l oosen other restrictions so children could more easily 
obtain marijuana.

Political fallout

Though Mr. Christie signed the bill, other obstacles cropped up, and 
Mr. 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 Twp., but after they 
changed it into an See page 21

 From page B1 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," 
Mr. Wilson said, saying they are not selling their home. By then, he 
hopes the state's 4-yearold 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 Mar y 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. Mr. 
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.

In an email, Donna Leusner, a spokeswoman for the Health Department, 
said patients are permitted to make their own edibles. But she later 
sent a second email 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.

Ms. Stormes, a registered nurse from Hope, 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.

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

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

[sidebar]

Growing need

While the first of New Jersey's three operating medical marijuana 
dispensaries is struggling, the two that opened last year have 
ambitious plans to expand.

Bill Thomas, the CEO of the Egg Harbor Twp. 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," Mr. Galanter said, asking patients 
to wait for the edibles the dispensary will produce.
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MAP posted-by: Jay Bergstrom