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SALT LAKE CITY — Parents who are desperate to find help to stop their kids' epileptic seizures are turning to a marijuana extract that is creating hope one state away. But are these parents chasing a false hope, or worse, actually asking for a drug that is untested at the federal level and possibly dangerous to their children?
Regardless, time is not on their side.
"Right now, doctors are giving us just a couple of years," said Kris Hampton, as she talked about her 15-year-old daughter. Kimmie Hampton has experienced seizures since she was 2 weeks old. Her longest episode lasted six hours at age 5.
Kimmie, from West Jordan, and other seizure patients take eight pills a day, costing thousands of dollars a month. She gets the drug from France and takes adult dosages to treat the epilepsy. And they're not totally safe.
"We've seen liver failure, we've seen kids pass away, we've seen blindness, and they're really just devastating," said Brad Nelson.
In Sandy, Nelson and his wife, Katie Nelson, played a board game with their 9-year-old son, Payton. He suffers 20 epileptic seizures day and night since infancy. His parents say the seizures have crushed his development.
- Is a derivative of a specialized hemp plant
- Differs from medical marijuana
- Contains only a fraction of the amount of the chemicals in marijuana that produce a high, according to its manufacturer
"He progressed to be a kindergarten age, 4 or 5, then we regressed and he lost the ability to do basic skills like write his name or do basic addition," Katie said.
These parents are begging Utah legislators to legalize a much cheaper strain of cannabidiol oil from marijuana that is not hallucinogenic, called Alepsia. State Rep. Gage Froerer, R-Ogden, is crafting legislation for January's regular session.
In Colorado, voters approved recreational use of marijuana. A group of brothers with their business "The Realm of Caring" produces Alepsia. Parents say it's worked well with other children that they know, although their children have not tried it. One lawmaker is hesitant.
"As an attorney as well as a doctor, I recognize that my license is on the line," said state Rep. Mike Kennedy, R-Alta. "Ethically, I'm supposed to do no harm and try my best to take good care of people."
He wants exhaustive clinical trials first. "There are systems that are set up that can make sure the chemicals are safe, especially for children," he said.
Kimmie Hampton hopes lawmakers hurry, "so I can stop these seizures from coming and coming."
Those will cost millions of dollars, but University Hospital Clinical Pharmacology Chief Dr. Michael Spigarelli said an epilepsy study — because of its urgency — could take three years.
"What are the risks for the person, and what are the benefits?" he asked. If the benefits outweigh the risks, Spigarelli said that gives institutions better footing to move forward and seek final approval from the Food and Drug Administration.
Both men are sympathetic to epileptic patients and their families but want to ensure that the extract will be safe, and not show horrible side effects unknown at present.