In June 2014, Andy and Cara Domer made a huge decision to move their family to Colorado, so their oldest daughter, Olivia, would have legal access to medical marijuana.At 4-and-a-half years old, Olivia, now age 9, was diagnosed with intractable epilepsy, which means that seizures cannot be controlled with treatment.Doctors in Colorado diagnosed Olivia with a second form of epilepsy known as electrical status epilepticus during slow sleep syndrome (ESES). While she sleeps, her brain shows seizure activity, even when she seems to be peacefully sleeping.Cara Domer said she and her husband uprooted the family after all of their options for Oliviaís treatment had been exhausted. Cara Domer and their three children ó Olivia, Isaac, age 7, and Elise, age 4 ó moved to Falcon in 2014 from Clayton, North Carolina. Andy Domer stayed behind to continue working as a physicianís assistant, and he moved to Colorado in February 2015. Cara Domer is a registered nurse.In Colorado, Olivia could begin a cannabis-based treatment of cannabidiol hemp oil CBD oil ó which is illegal in North Carolina.A hemp oil containing high-CBD, low-THC hemp; CBD oil is non-psychoactive, Cara Domer said. The hemp oil provides the benefits of the plant but not the ìhighî usually associated with recreational marijuana.The U.S. Food and Drug Administration has not done a controlled study on the effects of the treatment, but the Domers had heard encouraging stories about the positive effects CBD oil has on epileptic patients.ìIt was a horrible decision to have to make for something that can have such a huge benefit,î Andy Domer said. ìFinancially, it was a huge strain, and luckily we were able to do it. The potential benefit was huge. It wasnít a risk as much as it was a sacrifice.îThe downside to the move is that Olivia did not receive her first dose of the oil, a brand known as ìCharlotteís Web,î until December 2014, almost six months after they had moved to Colorado. At the time, there was a long wait list for the oil.Currently, Olivia is administered a small dosage of liquid CBD oil under her tongue twice a day, Cara Domer said. Since beginning the cannabis-based treatment, Olivia has shown no side effects.In North Carolina, Olivia had been taking 14 different types of medication, and none were effective.The pharmaceuticals caused Olivia ìhorrificî side effects, including psychosis, fits of rage and agitation, vomiting, vision loss, elevated liver enzymes, headaches, hyperactivity, loss of appetite, poor weight gain and growth, Cara Domer said. Some of her seizures worsened.Today, besides the CBD oil, Olivia takes just one other drug: Depakote, which is an anti-convulsant medication.ìOliviaís at that age now where she doesnít want to ó and shouldnít ó be known as the kid with epilepsy,î Domer said.However, Oliviaís epilepsy had always ìdefinedî the family, Domer said.Andy Domer said his wife became proactive; trying to pass legislation in North Carolina to legalize some forms of marijuana.Even in Colorado, the Domers still face legal dilemmas when it comes to cannabis-based treatments.ì(Marijuana is) still illegal federally, and the government doesnít want to make a decision so theyíve left it up to the states,î Andy Domer said. ìSo, weíre in that legal gray area. Yes, itís legal in Colorado, but we canít travel. Weíre basically stuck in the state.îThe Domers have their ìred card,î which allows people to purchase medical marijuana in Colorado. The Domers said they donít need the red card now to purchase CBD oil, but they renew it as a legal safeguard.Although marijuana use ó for medicinal and recreational purposes ó is legal in Colorado, the Domers said their experience has shown that some doctors are still hesitant or unwilling to prescribe it.The Domers said they want the FDA to conduct studies on the use of CBD oil.ìMarijuana is still classified as a Schedule I drug,î Cara Domer said. ìThat prevents studies from being done. Every parent I know whoís out here, obviously we want that research done.ìI still wouldnít call CBD oil a miracle. Iíve seen it do miraculous things, but I wouldnít say itís a miracle for us, because Olivia still has seizures. But it has helped her. We want our daughter to live the happiest, healthiest life she can.î
