CHERRY HILL, N.J. (AP) — Tatyana Rivera dances to the kitchen and grabs a sip of water from a plastic cup on the counter before darting off again.
Between trips, she leans her cheek against a visitor she’s never met and gazes up with soft brown eyes and a wordless smile.
It’s a good, seizure-free day.
There have been many in recent weeks, since the 7-year-old started swallowing drops of marijuana-infused coconut oil her dad cooks up for her on the stove. The homemade concoction took two years and thousands of dollars for her family to obtain through New Jersey’s stringent medical marijuana program.
For the little girl nicknamed “Tuffy,” the politically controversial medicine is something of a miracle drug.
Diagnosed at 10 months with a severe form of epilepsy called Lennox-Gastaut syndrome, Tatyana suffered up to 300 seizures a day, some lasting 10 minutes or more.
Combinations of powerful brain-calming prescriptions have done little but “paralyze” her brain, her dad explains. Epilepsy stole her speech and left her developmentally delayed.
The Camden County girl hasn’t been able to say “da-da,” since she was a baby. Lately, she’s been trying to feed herself, and has started interacting with others. For Tatyana’s parents, that’s worth fighting for.
“No one understands what it is we go through every day with my daughter,” Ricardo Rivera, a surgical technologist for a local hospital, told the Courier-Post (http://on.cpsj.com/YNanuK).
“I call her my angel warrior. She’s been through so much.”
Despite such stories of the drug’s benefits, few patients or doctors are buying into the state’s marijuana program.
Administered by the N.J. Department of Health, the medicinal marijuana program has enrolled 2,837 patients since it was launched. Just three alternative treatment centers are dispensing the drug, sold in bud form, cash only.
Of New Jersey’s estimated 40,000 hospice patients with fewer than six months to live, few are getting cannabis. A report issued by the state this spring found 212 terminally ill patients were enrolled in the program.
Of the 21,000 doctors in New Jersey, just 352 have registered to write marijuana prescriptions for one of 14 conditions covered by the program.
Its strict rules — including a bona fide relationship between patient and doctor — have been endorsed by the Medical Society of New Jersey.
Still, it’s no wonder more doctors aren’t signing on, according to Larry Downs, the organization’s CEO.
“Smoked marijuana, as a pharmaceutical intervention, is not well understood and not well studied,” he explains. “When you have that type of experimental therapy, it’s not surprising at all that physicians aren’t jumping over one another to get involved in the program.”
Indeed, it’s a high hurdle for pain specialist Dr. Richard Jermyn, director of the NeuroMusculoskeletal Institute at Rowan School of Osteopathic Medicine in Stratford.
He’s troubled by the lack of rigorous clinical studies available to doctors, and he’s “completely against” smoking the drug.
“I get a lot of people who come in here with chronic pain, who want to use marijuana,” the doctor relates. “Why would I choose a drug like marijuana over something that is well-proven in the literature and has proven efficacy?
“Should we be studying it (marijuana)? Absolutely. Right now, the cart is before the horse.”
But some hospice patients are benefiting from the program. Dr. Stephen Goldfine, chief medical officer for Samaritan Hospice in Marlton, has roughly a dozen terminally or chronically ill patients taking medical marijuana, usually in addition to potent pain drugs such as morphine and oxycodone.
“It’s been helping a lot with not only pain, but with a lot of nausea and vomiting,” he reports. “It seems like it’s making it better for them. I get really good feedback in terms of efficacy. People are liking it.”
Some are reluctant to smoke the marijuana buds, Goldfine contends, and would prefer taking the product in some other form, such as a lozenge or oil. But how much patients should take and in which form is still uncertain, as is how marijuana might interact with other medications.
“The more data we get, the better,” advises Goldfine. “That’s with anything in medicine.”
Dosage is a concern for patients and their caregivers, too.
“If you’re not ready to do trial and error, don’t go into the program,” says Tina DeSilvio, whose daughter Jenna, 14, started a marijuana regimen in January.
Jenna’s first seizures came on at 2 years old. A year later, in 2001, she was diagnosed with Double Cortex Syndrome, a congenital brain abnormality that causes seizures and intellectual disability.
Since then, the teen has tried a dozen prescribed, anti-seizure medications in endless combinations.
“She looked stoned and doped out from what the doctor prescribed her, which is federally approved,” DeSilvio recalls as she stands over a crock pot and a pile of marijuana buds — about a quarter-ounce — ready to be cooked down to a usable form.
The recipe is cobbled together from Google searches and advice from other parents with children enrolled in the program.
“It’s almost second nature, but I’m still learning,” DeSilvio admits. “There’s so much to learn,” she adds, breaking apart the dried buds with her fingers and dropping them into the slow cooker.
The marijuana will cook for five hours in a coconut oil. Then she’ll strain the oil in cheesecloth and store it in the refrigerator.
Every four hours, DeSilvio administers Jenna three types of oils, less than a milliliter each. She adds it to yogurt to mask the taste.
“She’s more clear now than she’s ever been,” DeSilvio observes.
Her daughter — once drooling, wearing a helmet at all times, and unable to speak — speaks clearly, laughing, and jumping around the kitchen.
Jenna’s April EEG, a recording of her brain’s electrical activity, was clear.
“She’s never had an EEG that was clear,” the mother says, still stunned that a plant steeped in coconut oil has drastically reduced the number of her daughter’s seizures, their frequency and duration.
“I’m not going to whisper about it anymore. I did at first. I want people to know that it’s working.”
Information from: Courier-Post (Cherry Hill, N.J.), http://www.courierpostonline.com/
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