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Utah parents look to Colorado for 'life-improving therapy' found in cannabis extract

Published: Tuesday, Nov. 12 2013 7:35 p.m. MST

Rep. Gage Froerer, R-Huntsville, calls for parents of children with epilepsy to stand during a Department of Commerce Controlled Substances Advisory Committee meeting in Salt Lake City, Tuesday, Nov. 12, 2013, regarding THC for medical use.

Ravell Call, Deseret News

SALT LAKE CITY — Isaac's family is prepared for the worst. They know that any one of the dozens of epileptic seizures he has each day may take the 7-year-old's life.

"It is hard to be told that your child will never learn to read or write, he won't graduate from high school or go on a mission or get married," Isaac's mother, April Sintz, said Tuesday. "As we come to understand this disease and we love him unconditionally, we are grateful we have what we have.

"We love him, but we live our lives in crisis mode every day," she said.

Sintz, of South Jordan, is one of several Utah moms asking the state's Controlled Substance Advisory Committee for an exception on a hemp-based supplement that would likely put an end to her son's epileptic seizures.

Alepsia, cultivated by the Colorado nonprofit Realm of Caring Foundation is a derivative of a specialized hemp plant that has shown efficacy in small clinical trials in reducing epileptic activity. It differs from medical marijuana in that it contains only a fraction of the amount of the chemicals in marijuana that produce a high, and very few, if any, side effects.

The oil extract is high in cannabidiol (CBD) but low in tetrahydrocannabinol (THC), making it non-psychoactive, according to Alepsia creator, Josh Stanley, of Colorado Springs.

Stanley said the product is as legal as other hemp products already sold in stores across Utah, including other oils, clothing and hand creams, but is illegal, federally, to take across state lines.

"The purpose of this isn't to add to the gross domestic product," he said, but it has become "a health situation" for a number of families here.

There are more than 100,000 Utahns with epilepsy and approximately 33,000 have a type of the disease that is resistant to drug treatment, requiring frequent changes in dosing and administration, resulting in a "magic cocktail" of medications that is different for everyone and ultimately takes a physical toll on the body, according to Annette Maughan, president of the Epilepsy Association of Utah and the mother of an epileptic.

Maughan said about 10,000 Utahns suffering recurrent seizures are children.

"It tears your heart out every time it happens," she said. "And then there is the roller-coaster ride that is associated with the hope you have every time you think a new drug is working and then find out it doesn't.

Maughan said she is "as upstanding as they come," but she wouldn't blink at giving her 11-year-old son the cannabis extract to control his seizures. She would not, however, permit the use of medical marijuana in her son.

A leading pediatric neurologist who has cared for children with epilepsy in Utah for more than 25 years came out in support of the use of cannabidiol oil Tuesday, saying cannabidiol oil "holds great promise as an anti-epileptic agent."

"I would like to express my strong belief that CBD-based oils should be available as soon as possible to Utah children with severe epilepsy," Dr. Francis Filloux, University of Utah professor of pediatric neurology, wrote in a letter delivered to the committee Tuesday. "The substance is not psychoactive or hallucinogenic, it contains less THC than do other materials that can be legally purchased in Utah, and it has absolutely no abuse potential."

Filloux said that if allowed, the extract's use would be closely monitored by physicians familiar with the disease. If it isn't allowed, "as a community, we would be making the decision to limit access of our children to a potentially life-improving therapy," he said.

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