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    Posted June 16, 2014 by
    4epilepsy
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    This iReport is part of an assignment:
    Raising a special needs child

    Special Needs Parents Group Wants Feds to Reschedule Cannabis

     

    CNN PRODUCER NOTE     Suzanne De Gregorio shared the story of Connor, the son of Becky Gaunt. Connor has tuberous sclerosis complex, a genetic disorder that causes benign tumors to grow on his organs. Currently, he has tumors in his brain, which Gaunt says causes seizures. This photo was taken of Connor after he was wheeled out of brain surgery in July 2012. At the time, he was only four months old. Gaunt says while the surgery helped lessen the seizures, it hasn't stopped them. Connor is now almost three years old, and his seizures come and go in waves of intensity. Gaunt says she and his doctors haven't found a treatment that stops him from seizing.

    De Gregorio was inspired to share Connor's story because she is frustrated that medical cannabis research is being blocked. Currently, in many states, marijuana (cannabis) is deemed a Schedule 1 drug. Schedule 1 drugs are defined as drugs with no currently accepted medical use and a high potential for abuse. Schedule I drugs are considered the most dangerous drugs by the Drug Enforcement Administration's standard.

    De Gregorio's 12-year-old son Alex has regressive autism and multifocal petit map epilepsy, which means he, like Connor, also has debilitating seizures. She believes strives in medical cannabis research may help her son cope with his condition. 'Many of us work on the cause early in the morning and late at night because the hours in between are filled with seizures,' she said. De Gregorio, who is also undergoing cancer treatment, says it's hard to battle her own aliment while also petitioning the government to consider devoting more resources to medical marijuana research.

    'A doctor’s decision whether to prescribe the (cannabis) oil to epileptic kids should be dictated only by medical necessity and never by fear of Schedule 1 ramifications,' she said. 'I want cannabis rescheduled so medical research can happen in the United States and patients can have safe access. I want the cloud of fear gone so people can get what they need.'
    - Jareen, CNN iReport producer

    For many with the Parents Coalition for Rescheduling Medical Cannabis life doesn't revolve around soccer matches, dance recitals, and play dates. It’s consumed by their kids’ violent seizures, trips to the emergency room, and now – trying to convince the federal government to remove cannabis from the list of banned Schedule 1 controlled substances.

     

    Schedule 1 is reserved for drugs the United States government says have no medicinal value and are too dangerous for use, such as heroin and LSD. Yet, these parents question cannabis’s restriction among such harsh drugs, given research from other countries suggests the plant may be a safe and effective treatment for a host of conditions, including epilepsy. They watched Dr. Sanjay Gupta on CNN profile a child whose intractable seizures reduced significantly when taking Charlotte’s Web, a non-psychoactive hemp oil extract high in the substance cannabidiol, also Schedule 1. They read the report from Stanford University on epileptic children using the oil that suggests side effects are minimal to none. With time working against their own children, this group of special needs parents from across the country decided to take action.

     

    These parents believe the solution lies in the removal of cannabis from Schedule 1, which would allow medical research on the plant in the United States. They say Schedule 3 or lower is ideal because that would enable regulation and safe access. President Obama and Congress each have the authority to reschedule cannabis, but neither appears willing to make the move.

    “The government believed synthetic THC was okay to schedule in the class with Vicoden, Schedule 3, but when the rest of the plant is added to it, the non-psychoactive components, it gets put with heroin and LSD.”, said Dr. Thomas Minahan, an emergency room physician from Corona, California whose epileptic daughter, Mallory, experiences dramatic seizure reduction on the oil. “As a physician, I know this plant has medicinal value; we need to research it. If the scheduling could be changed, we could do the necessary studies. If the scheduling was changed, thousands of kids’ lives would improve. The financial benefits for insurance companies and parents would be astounding.”

     

    Schedule 1 status has also proven problematic to places trying to implement state sanctioned medical cannabis programs. Since the plant is still federally illegal many doctors, hospitals, and universities in legal states refuse to order these products for patients, fearing licensure risks. They only want to use FDA approved cannabis based medicines, but research and development of such drugs for epilepsy could take years.

     

    “The fear of living with refractory epilepsy is not something people should have hovering over their days in the sun, especially when there is such a promising, natural treatment on the horizon.”, said Annette Maughan, President of the Epilepsy Association of Utah and mother of an epileptic son. “While politicians regurgitate the same unsubstantiated rhetoric, parents are holding their children for the last time. Instead of mothers putting their daughters’ hair in pigtails, they are taking clippings of it as keepsakes. Fathers who should be using their hands to play catch are using their hands to lift their boys’ caskets. This is life and death and it is very real to us.”

     

    In Kentucky, where the state legislature voted unanimously to legalize Cannabidiol Oil this year, parents have been unable to obtain it for their children. Neurologists Dr. Chris Shafer and Dr. Karen Skjei expressed their frustration to Louisville’s WFPL citing, “federal prohibition of the oil” among a list problems delaying access to product in that state.

     

    It is much the same in Utah, where similar legislation was enacted earlier this year.

     

    “Utah lawmakers sent a strong message with HB 105: let the doctor and the patient or caregiver decide what treatment option is best, and if that includes an oil from cannabis then so be it; we will not be involved.”, said Maughan. “Our Department of Health is developing a program with us, and yet our doctors are being told that there still may be ramifications because it’s all Schedule I.”

     

    Nevertheless, the Parents Coalition to Reschedule Medical Cannabis remains undeterred. These mothers and fathers have beaten the odds before, helping pass medical cannabis legislation in their home states. The group operates from sheer will to save their children and no budget. It meets with federal legislators and is participating in an Epilepsy Foundation sponsored letter writing campaign to Attorney General Eric Holder. The parents also plan to take their cause to the nation’s capital later this year.

     

    “We are parents of children with devastating illnesses.”, said Jill Swing, a lead Coalition organizer from South Carolina. “We are fighting for better quality of life for our children. We will not stop until this plant is federally legal for medical research and compassionate use. That means rescheduling.”

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