Drugs

Families With Epileptic Children Moving to Colorado For Medical Cannabis Treatment

A strain of cannabis that reduces seizures in epileptic kids has many desperate parents packing for Colorado.

Photo Credit: USA Today

Due to restrictive U.S. drug laws, thousands of parents are unable to access the one known medicine with the potential to help their epileptic children: a strain of cannabis called Charlotte's Web. So hundreds of those parents are uprooting their families and moving out of state, or in some cases country, to Colorado.

USA Today replaced its logo with a pot leaf on February 18 to draw attention to a story by Marisol Bello about “a migration of parents who, after trying countless methods to ease their children's crippling seizures, are packing up their families and moving to Colorado.”

The article starts off with the story of a 7-year-old who has 15 seizures a day that keep her from walking steadily, talking and leading a normal life. She’s already tried the pharmaceutical drugs Onfi, Depakote, Felbatol, Keppra and Prednisone, been put on strict diets and even undergone brain surgery—nothing helped. When her parents learned about Charlotte's Web, they began packing for Colorado.

Charlotte's Web does not have the psychoactive effects many strains of cannabis have because it is low in THC, the element that gets users high. Instead it contains a substance called CBD, which has anti-psychotic effects, and naturally counteracts with THC. It's named for Charlotte Figi, an epileptic 5-year-old whose story was made famous in the 2013 CNN documentary Weed. Charlotte used to suffer from 60 seizures a day, and is now seizure-free, according to her parents. 

Bello's USA Today article visits Realm of Caring, a foundation in Colorado started by the family that grows Charlotte's Web. Heather Jackson, executive director, told USA Today the foundation currently treats 100 patients whose families have moved to Colorado from 43 states and two countries. More than 2,000 people remain on the waiting list.

While the success stories are stacking up in regards to Charlotte's Web's ability to treat epileptic children, the medical research is slim, due to U.S. drug laws. Write Bello in USA Today, the “Epilepsy Foundation and the American Epilepsy Society do not expressly tell families not to use medical marijuana, but they warn there is not enough research to show whether it is safe and effective. They urge patients to work with a doctor to determine the best treatment.”

Paul Armentano, director of NORML, has noted that some cannabis compounds could negatively affect brain development in younger people. However, medical use of the herb isn't associated with any serious negative side effects, according to a meta-analysis published in the journal of the Canadian Medical Association. But since they've exhausted the options proposed by their doctors, and the alternative in many cases is their child’s death, many families with epileptic kids have decided “the unknown is worth the risk.”

According to the article, several of the families that moved to Colorado live within blocks of each other and have formed support communities in their new home.

Anna and Biagio Burriesci moved from New York City to help their 2-year-old daughter Grace, who was born healthy then started to have up to 300 seizures a day when she was a year old. Now the Burriescis live down the street from another family with an epileptic child in Colorado.

Biagio Burriesci, a former pediatrician, told USA Today his family learned that some other families were moving to Colorado "hoping for a miracle," last summer.

"This condition ultimately meant death for our kid, so we were going to war for her," he said. "Families are desperate."

Due to the war on drugs mentality that still governs U.S. cannabis policy, these families are stuck with a terrible choice: Uproot their lives and leave behind their homes and communities in the hopes that cannabis medicine will help their epleptic children, or risk losing their children. A new safe haven now exists in Colorado—yet it’s disgraceful that it's the only one. It's time to remove cannabis from its Schedule I drug classification, and dismantle the research blockade so that more families can access this medicine.

April M. Short is a yoga teacher and writer who previously worked as AlterNet's drugs and health editor. She currently edits part-time for AlterNet, and freelances for a number of publications nationwide.

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