Advocating for Avery Joy By Abby Meaux Conques
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very Joy was just three months old when she began having seizures. Her Mom, Abbey Benjamin, explained that doctors diagnosed her daughter with epilepsy and that even though she left heart-wrenching doctor appointments with prescriptions for epilepsy drugs which seemed to help, they only helped for a year. “They stopped for a year, but came back and never left,” Benjamin said. No stranger to the medical field, Abbey is a former pediatric nurse, now working in hospice, from Monroe, Louisiana. When Avery Joy's seizures started up again, Abbey and husband, Christopher, began a crusade to find something to help their daughter. “At one point she was on four different medications. Her seizures would sometimes last up to 20 minutes at a time,” she explained. Abbey explained that two of the medicines that Avery Joy was on were meant as rescue medicines, but neither of them pulled her out of seizures well. Abbey describes the next few years as a ‘long-time medicine journey” trying varying medicines in different combinations. The search for medicines led their family to a doctor who suggested vagal nerve surgery. “We didn’t know what else to do,” she said. “We were just trying everything we were told to do.”
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The Benjamin family scheduled Avery Joy’s surgery as she was having an average of 6 seizures a day. Soon after the surgery was scheduled, Abbey spoke with someone who asked her if they tried prescription CBD to treat Avery’s seizures. Abbey mentioned trying the prescription with Avery Joy’s doctors, and they approved her for Epidiolex, a FDA-approved drug which is a cannabidiol oral solution for the treatment of seizures. The drug contains no THC, the active ingredient that causes intoxication or euphoria (otherwise known as the “high” from the cannabis plant). “We started the prescription a few months before the scheduled surgery, and in one month of use, Avery Joy went from 6 seizures a day to none!” she exclaimed. Avery Joy began the new treatment regimen on December 10, 2019. “With the progress, we began to wean her off of other meds and we were actually able to cancel her surgery,” she explained. “She’s a much happier girl...we just had to do everything we could as parents...we had to be her advocates.” Avery Joy is 4 now and she’s still only on a high dose CBD and vitamin regimen. She enjoys her time with her parents, laughs a whole lot and loves being adored by older brother, Thomas, whose favorite thing is being strong enough to hold his little sister who he’s so smitten with.
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