Pubdate: Mon, 30 Mar 2015 Source: Dayton Daily News (OH) Copyright: 2015 Dayton Daily News Contact: http://drugsense.org/url/7JXk4H3l Website: http://www.daytondailynews.com/ Details: http://www.mapinc.org/media/120 Author: Lisa Bernard-Kuhn, WCPO 9 On Your Side PARENTS MOVE FAMILY FOR MEDICAL POT Daughter Suffers From Seizures Daily. Couple Can't Wait for Ohio Voters to Decide Issue. LIBERTY TWP.- Three-year-old Addyson doesn't understand why her favorite toys, books and everything she knows as home is packed away in boxes. "When she has a seizure, we try to explain to her that 'this is why we're moving, we're going to get help for you and these are going to go away,' "said Heather Benton of her red-headed toddler who suffers hundreds of seizures a day from myoclonic epilepsy. Heather and Adam Benton are joining the ranks of hundreds of U.S. parents who have moved across the country to secure medical marijuana for their children. The couple is packing up the last of their Liberty Twp. life and setting out to begin the 1,200-mile trek to a new home in Castle Rock, Colo., where a strain of medical cannabis is growing especially for Addyson. The move is the culmination of nearly two years of planning, researching and waiting by the Bentons to see if marijuana will be legalized in Ohio. Efforts underway now could bring the issue to Ohio voters in November, but the Bentons said sticking around to see what happens isn't an option. "We can't keep waiting and waiting to get relief for Addyson," said Heather Benton. "If Ohio gets on board, maybe we can come back." This month, state officials signed off on an initial approval needed to place a proposal to legalize marijuana on the November ballot. Now the group leading the effort, ResponsibleOhio, needs to collect about 306,000 signatures by July in order to take the issue to voters this year. The proposal calls for allowing recreational pot use for individuals 21 and older, and medical marijuana use for adults and minors who have parental consent. If approved, the amendment would create a nonprofit medical marijuana dispensary system in Ohio, overseen largely by a to-be created Marijuana Control Commission. That commission would have a role in creating the fee structure for the medical pot, which unlike marijuana sold for recreation use wouldn't be taxed, according to the amendment. Also, the commission would be charged with crafting rules for regulating prescribers and ensuring that a system is in place to track just how much marijuana is sold for medical and recreation purposes, said Lydia Bolander, a spokeswoman for ResponsibleOhio. "The idea is that most physicians will be able to use this as a viable treatment method and patients will have to have a pre-existing relationship with that physician," said Bolander. Meanwhile, state legislators are also considering a bipartisan bill that would legalize cannabis-derived medications like those the Bentons are seeking in Colorado. The proposal would allow certain doctors to prescribe an oil made from a strain of marijuana that is heavy in cannabidiol, or CBD, a non-pyschoactive component of pot, and low in tetrahydrocannabinol, called THC, the chemical that produces a high. In Colorado, a strain known as Charlotte's Web has become the calling card for parents like the Bentons. The strain is named after a 7-year-old girl who saw her seizures drop after taking the cannabis in an oil form. "It's not something that's going to get her high," said Heather Benton. "We're not risking our daughter's life. We want to give her something pure, that's made from the earth and doesn't include chemicals that could damage her liver, but helps make her better." Doctor groups balk Leading physician groups are less certain about the use and benefits of medical marijuana. The Ohio State Medical Association and American Medical Association remain opposed to the drug's use for medical purposes. At issue for many of the physician groups is the lack of clinical tests and research to prove the drug's medical benefits said Reginold Fields, a spokesman for the Ohio association. "Our membership does not feel there is enough conclusive evidence that has determined the exact medical benefits from marijuana," Fields told WCPO. Part of the problem, medical experts say, is that marijuana is still considered a Schedule I drug by the federal government - placing it in the same category as heroin and methamphetamine. The classification places tight restrictions on who and how clinical trials can be done, officials said. "This really inhibits our ability to do adequate research," said Dr. Michael Privitera, incoming president of the American Epilepsy Society and director of the Epilepsy Center at the University of Cincinnati Neuroscience Institute. UC and Cincinnati Children's Medical Center are each in line to launch clinical trials to test the use of marijuana-derived medicines for patients with epilepsy. Meanwhile, results from the limited research available has some doctors concerned about the growing use of CBD for children with epilepsy, Privitera said. The study by a team of researchers at Children's Hospital Colorado found that use of CBD oils resulted in no significant reduction in seizures in the majority of patients, said Dr. Amy Brooks-Kayal, president of the American Epilepsy Society and chief of Child Neurology at University Colorado. Additionally, in 20 percent of cases reviewed seizures worsened with use of cannabis and in 47 percent of patients there were adverse events, some being severe. Some of the concern and challenge for Colorado doctors is the cannabis oil being prescribed to some children can vary batch to batch in levels of CBD, complicating researcher's ability to test for the drug's effectiveness. Quality questions "The concern is this stuff in Colorado is being grown by guys who are trying to do the right thing, but there are a lot of questions about quality control and dosing levels things that could put these kids at risk," said Privitera. "It really emphasizes to us that good, controlled research is needed." Brooks-Kayal agreed, adding that while Colorado neurologists continue to treat children whose parents are giving their children various strains of medical marijuana, none are prescribing the drugs. Instead, the drugs are prescribed by just a handful of doctors across the state. "We value transparency with our patients, and we do everything we can to work with families to keep their children safe," said Brooks-Kayal. "I've seen a lot of families spend a lot of resources on something that hasn't worked for them. It just underscored the fact that there forms of epilepsy that are severe and life impairing and we need better treatments and research." As for the Bentons, they say they're following the recent studies and have experienced firsthand hesitation from physicians as they've pursued their research and plans to move to Colorado. In recent months, the couple says the drug Depakote has helped greatly reduce Addyson's seizures. But they're concerned that the twice-a-month blood tests may eventually show the toddler's tiny liver isn't be able to handle doses of the drug long term. Tough nights with their blue-eyed daughter remind them why they're committed to the move, they said. "We still have nights where we sit there, watching her little body seizing," said Healther Benton. "I just want to be able to give her something safe to give her relief." - --- MAP posted-by: Jay Bergstrom