Taking steps to get their sick children usable pot

Nearly a year ago, the Franklinville teen in the pink helmet began taking a spoonful of flavored yogurt four times daily, spiked with a few drops of liquid marijuana.

Bought from a licensed New Jersey dispensary for about $500 an ounce, the tiny bit of marijuana each day has changed the life of the developmentally challenged girl, her mother, Tina DeSilvio, said in an interview last week in their Gloucester County home.

Jenna is calmer, "a lot happier, and she has a lot less seizures," DeSilvio said as she displayed a bottle of cannabis oil she made from dry buds using a 10-step cooking-and-drying process she found on Facebook.

The 15-year-old girl suffers from double cortex syndrome, a rare seizure disorder that can cause frequent convulsions, drooling, dangerous falls, and learning difficulties.

Across the country, some parents report cannabis has dramatically helped their epileptic children. The FDA has not approved its use because the federal government still considers marijuana an illegal drug and traditionally has refused to authorize studies to see whether it has medical benefits.

Vivian Wilson, 3, who has a potentially deadly type of epilepsy, is one of the reported success stories. After taking a small dose of marijuana oil under her tongue over the last 11 months, she can now go outside without having a seizure, her father, Brian, said in a phone interview Thursday from Denver.

"We took her to Red Rocks - it was a hot, shining bright day," Wilson, formerly of Scotch Plains, N.J., said, describing brilliant lights that used to trigger Vivian's frightening seizures. "We were there for a good two hours, and she did fine."

Seventeen months ago, Wilson had urged Gov. Christie at a campaign stop in Scotch Plains to sign a bill that would allow edible marijuana to be sold. "Please don't let my daughter die, governor," he said in a videotaped encounter that went viral on YouTube. Vivian had a card qualifying her to use marijuana, but she needed a type she could consume.

The bill was signed in September 2013, but state regulators have not yet approved any edibles for sale, saying the process is continuing. In other states, cannabis oils, butter, brownies, and candies are available.

Wilson became one of the hundreds of parents with sick children who moved their families to Colorado after marijuana was legalized in January. He said the family could no longer wait for the state to "fix its program" and make it less restrictive for sick people to get access to pain relief.

Vivian's quality of life has improved, Wilson said, but she still suffers from occasional seizures. Recently, she had one that was so bad she was hospitalized for five days. "Cannabis," he said, "is not like a magic bullet."

DeSilvio said Jenna had had a similar experience. Though Jenna used to have daily seizures, she now has six-day stretches without any, her mother said. When the convulsions occur, they are less severe.

As Jenna got off the school bus on the day of the interview, she smiled and began to remove her hot-pink helmet. She no longer needs it, DeSilvio said, but the school requires it for liability reasons. Within a few minutes, Jenna began shrieking and had a seizure, which DeSilvio quieted by placing a few drops of the marijuana oil under her tongue.

DeSilvio, who once served on the local school board, has lobbied legislators to change the marijuana law. In the fall, she attended some of the weekly protests held at the Statehouse to draw attention to the problems with the program. Jennie Stormes, of Hope, Warren County, who has a child with epilepsy, organized and led the demonstrations, until she, too, moved to Colorado in October.

The New Jersey Department of Health, which oversees the program, said in an e-mailed statement the department was "focused on patient and employee safety in the manufacturing process to produce edible products. The department is evaluating manufacturing protocols to ensure safety." No other details were provided.

In February, when The Inquirer asked whether it was legal for the parents to make the oils, Donna Leusner, a department spokeswoman, said there was no law prohibiting the activity. A few days later, she wrote that it would be safer for parents to wait until approved edibles became available through the dispensaries and that the department was "working expeditiously" toward that goal.

DeSilvio said that, had she waited, Jenna would have been deprived of a special year in which she suffered only half as many seizures as she had in previous years. Jenna also would not have had the chance to be slowly weaned off an antiseizure medication that has serious side effects, her mother said.

Frustrated, DeSilvio said she had put her lobbying efforts on hold because Christie has stated he was not interested in improving the marijuana program. His spokesman did not answer an e-mail asking for comment, but he has reiterated in town halls and interviews his reluctance to change the program.

"The program is in shambles," DeSilvio said. She is turning her energies to helping other parents navigate the system and to teach them how to convert marijuana into oil. She created a YouTube video demonstrating the steps for making the cannabis oils, also known as tinctures, and helps shepherd a Facebook website, New Jersey Parents for Pediatric Cannabis.

She even invites parents into her home to help them with the tincture recipe. She mixes marijuana buds with grain alcohol, filters it, waits for it to harden, scrapes it from a bowl, bakes it to change its composition, and adds it to coconut oil. The process takes a couple of days.

"At first, it seems overwhelming," DeSilvio said. "But you go to the end of the earth for your kids."