Parents of epileptic N.J. tot lament medical marijuana delays

A 2-year-old with a bouncy pigtail and colorful eye patch may be the youngest patient to obtain a medical-marijuana card in New Jersey.

Children in the state who suffer serious ailments can legally use marijuana, but an array of prohibitive regulations and the drug's stigma may prevent little Vivian "Vivie" Wilson and others from getting their medicine anytime soon.

Her parents, Meghan and Brian, of Scotch Plains, had to push hard to get their tot approved to take a drug most other parents don't ever want their children to try.

Vivie suffers from Dravet syndrome, a rare, severe form of epilepsy that led to 20 hospital stays and caused convulsions lasting up to an hour. Because of privacy concerns, the state Health Department won't say how many other children have been approved for cannabis or divulge their ages.

But when reporters asked Gov. Christie last month about Vivie's case, he was surprised to hear of it. He said he was "not inclined to allow" marijuana to be dispensed to minors.

Christie cannot intervene with a card-carrying patient. But the governor can veto a bill that calls for changes in the medical-marijuana law and the regulations that would give easier access to children, simplifying the approval process and allowing an edible form to be sold. The bill cleared the Senate last week and now faces Assembly review.

After inheriting the marijuana law three years ago, Christie insisted on strict regulations, saying he wanted to show compassion to the sick but did not want "potheads" to get the drug.

Still, some regulations have the effect of making it difficult for sick children to get cannabis. One rule requires them to get consent from three doctors; adults need only one. Another rule bans edible cannabis, which is the form children can most easily consume.

"I don't want Vivie to smoke," Meghan Wilson said. She said other states, notably Colorado and California, sell cannabis as a tincture, an extract that can be put into butter, or in other food.

Dispensaries also are restricted to selling only three strains of the drug. Because Dravet is so rare, a dispensary may not offer the special type these children need, she said.

Wilson wants Vivie to have cannabis because the girl's seizures and the barbiturates she has been prescribed "kill brain cells." She cited anecdotal evidence of a cannabis strain that doesn't get patients "high" but that stops seizures and has no side effects.

New Jersey recognizes a dozen diseases and conditions, including epilepsy, that can be treated with marijuana.

In February, Vivie received a marijuana card, a wallet-size ID resembling a driver's license. It has an official logo and a photo of her face, sans smile, as is customary in licenses.

But the card is stashed away.

So far, only one dispensary is open in the state, and it limits its business to North Jersey residents. Vivie lives in the central part of the state, where a proposed dispensary has not received a permit to grow marijuana. In South Jersey, a dispensary is expected to open in Egg Harbor Township in the fall.

Wilson says waiting is difficult. She cites the success stories of 20 children with epilepsy who for the last two years have used a new strain of marijuana in Colorado called "Charlotte's Web." According to Facebook reports posted by their parents, the children are seizure-free.

The strain has high-potency cannabidiol, a compound known as CBD, and does not contain THC, the intoxicant that provides the "high."

The American Academy of Pediatrics opposes cannabis, and many doctors are skeptical.

Vivie's neurologist, Orrin Devinsky, director of the New York University Comprehensive Epilepsy Center and the St. Barnabas Institute of Neurology and Neurosurgery in Livingston, said in an e-mail: "More studies are needed." But he supports Vivie's getting cannabis, he said, "given the severity of her epilepsy."

Devinsky has proposed conducting trials of CBD with children and young adults who have treatment-resistant epilepsy.

Last year, the Wilsons got Vivie an eye patch and put her on a strict high-fat, low-carb diet, measures that reduce seizures. Now they aim to stop her seizures altogether.

But Meghan Wilson said misperceptions about marijuana persist. She called 20 doctors registered with the marijuana program before she found one willing to certify Vivie as a patient. "Wait, you want to give your kid marijuana?" some asked incredulously before hanging up.

The only one who stayed on the line was gynecologist Anthony Anzalone. At first, he hesitated. But after hearing about Vivie's situation and that of Jackson Stormes, a 14-year-old with Dravet, he agreed to be the doctor who facilitates access to cannabis for children when traditional treatments fail.

Jennie Stormes said her son fills the bill. He had brain surgery at Children's Hospital of Philadelphia in 2008, had an antiseizure device implanted in his chest at a California hospital, and has been prescribed about 35 narcotics over the years to control up to 20 seizures a day, she said.

"I have exhausted all of my options," said Stormes, a registered nurse who lives with her son and older daughter in Hope, Warren County. Jackson has developmental problems and can't speak.

Anzalone, who also practices general medicine in his Rutherford office, said many doctors "don't feel comfortable with marijuana" because they still see it as a street drug.

New Jersey is among 18 states with a marijuana program despite a federal ban on the drug. Pennsylvania has no such program.

After getting a medical degree in Guadalajara, Mexico, in 1979, Anzalone did a residency at Jersey City Medical Center. He said he had done some research and saw cannabis as a promising alternative medicine. Because insurance does not cover cannabis, he charges $100 in cash for a visit and requires three before he issues a certification.

After Anzalone signed off on Vivie, the Wilsons found out they had to get recommendations from a pediatrician and psychiatrist. After a while, they found a sympathetic psychiatrist, though Vivie says only three words: hi, bye, and baba (for "mama").

Brian Wilson blames the Health Department for "regulating the program into oblivion," creating excessive rules for patients, doctors, and dispensaries.

He said he struggled to understand the rule that restricts the number of strains dispensaries can sell. A Health Department spokeswoman, in an e-mail, said the rule was based on a model "which allows for evaluation among the physician and patient as to what works best for the patient."

She said there were "no current proposed rule changes."

The rule that says cannabis can't be sold in an edible form is also troublesome, the Wilsons say. A cannabis lozenge is allowed, but they say it could make a child choke or may contain sugar, which is verboten in Vivie's diet.

Meghan Wilson bristles when she recalls how a prominent epilepsy specialist in Miami mocked parents who advocate for medical marijuana when he showed a picture of a child "smoking a joint" during a speech last year. She said children in other states take marijuana the way they normally take medicine, by ingesting it.

Stormes and the Wilsons, who also have a 4-year-old daughter, say they have considered moving. But uprooting would be tough, they say.

Meghan Wilson, who manages pharmaceutical clinical trials, said Vivie's grandparents and friends live nearby, providing a loving support system that allows her and Brian to work. Brian Wilson is a software consultant who recently created a website, lettersforvivian.org, to win public support and lobby lawmakers.

They also are lifelong New Jerseyans.

Stormes said: "Unless things drastically change in New Jersey, how do I deny my child access to medical marijuana? . . . I literally have to choose between the education that has worked for him or the medication" he needs.