http://www.philly.com/philly/news/new_jersey/20140211_More_parents_creating_marijuana_usable_for_ill_children.html#QooMjyjJD4JhqECV.99More parents creating marijuana usable for ill children
Tina Marie DeSilvio gives her 14-year-old daughter, Jenna, who has a rare brain disorder, a homemade tincture, using 180 proof alcohol and frozen, strained cannabis buds at their Franklinville home February 4, 2014. Jenna, a NJ medical marijuana card-holder, uses the marijuana to control her seizures. (TOM GRALISH/Staff Photographer)
Last updated: Tuesday, February 11, 2014, 1:07 AM
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?" 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 this 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."
