shelby and momKENTUCKY (3/5/18) — When 12-year-old Shelby Mathews started having seizures at 4 months old, it was two years before Cleveland Clinic physicians diagnosed her with Dravet Syndrome.

The rare and often deadly disorder is resistant to traditional treatments and anti-epileptic medications. Most children die by the age of 10, said Shelby’s mother, Kristin Wilcox.

Wilcox said she is fighting for her daughter’s life by bolstering support for two bills in the state General Assembly — House Bill 166 and Senate Bill 118 — in hopes that laws will allow her daughter to get the treatment she needs.

“There is no FDA approved treatment protocol for children suffering from this condition,” she said. “She’s been life flighted 26 times. However, it’s been known for a long time that cannabinoids can help control epileptic seizures. However, it could not be studied due to the FDA’s Schedule 1 label.”

Schedule 1 substances are categorized by their potentials for abuse and addiction by the Federal Drug Administration.

After Kentucky passed a hemp bill in 2014, Wilcox was able to reach out to a pharmaceutical company in France that had developed a CBD-derived product called Epidiolux. Cannabinoid receptor 1 (CB1) of the endocannabinoid system has been used as anti-seizure treatments.

“I was looking for help for my child as the company was looking to start trials here in the U.S.,” said Wilcox. “After years of discussing the treatment with Shelby’s team of willing physicians, we were able to start receiving cannabidiol through a University of Louisville pediatric research unit in 2016.”

After two years, Shelby is one of four children still in the original trial.

“We've seen a drastic reduction in seizures both in frequency and intensity as well as cognitive gains,” said Wilcox. “We've also been able to cut her other medications by half or more that have left her liver severely damaged.”

But Wilcox fears the help her child is receiving through the trial is going to change.

“What was intended to only be a 14-week long trial has already been extended to two years,” she said. “At any given time, the company or doctor can decide to stop the trial, as they've already gathered the needed data for research purposes. If this happens, we would no longer have legal access to this treatment, doctors wouldn't be allowed to prescribe it and would be forced to go back to the medications that were failing her previously.”

Wilcox’s hope is that legalization for the treatment is passed in Kentucky.

“With legalization, not only could we have that assurance but also we'd have access to other forms of cannabinoid products used in emergency situations, where seizures are concerned,” she said. “Right now, when she has a seizure, whether it be in the middle of Walmart or in a classroom surrounded by concerned peers, our emergency treatment requires a large dose of rectally-administered Valium that comes with great side effects such as respiratory distress and the possibility of cardiac arrest. With cannabis legalization as we have seen in other states, there are better options like a simple nasal spray without any harmful side effects.”

With public support for legalized cannabis in the state growing, Wilcox is counting on legislation to change.

“The hemp that's available in Kentucky right now is, unfortunately, not the answer,” said Wilcox. “Many of those CBD products being sold here as medicine not only lack the medicinal value of whole plant medical cannabis, but also some are even harmful, having been sprayed with dangerous chemicals (pesticides, herbicides, fungicides, etc.) as our 2014 hemp farming bill didn't cover any regulations to protect potential consumers.”

The Beaver Dam mother said she has worked closely with state Sen. C.B. Embry, who is co-sponsor of SB-118. Sunday, Embry said the likelihood of passing either SB-118 or HB-166 in this General Assembly is bleak.

“I am trying my best to help Shelby and children like her,” said Embry. “However, it appears it will be difficult for SB-118 or HB-166 in this session. We have only 17 days left in the session with the pension and state budget bills still in play.”

Medical marijuana use has been legalized in 29 states and the District of Columbia. Studies have shown medical marijuana has success in use for post traumatic stress disorder, multiple sclerosis, Alzheimer’s Disease, Crohn’s Disease, hepatitis C, cerebral palsy as well as epilepsy.

Wilcox is asking citizens to contact legislators to push for the medical marijuana bills. To find and get contact information for state legislators, go to: http://www.lrc.ky.gov/Find%20Your%20Legislator/Find%20Your%20Legislator.html

Rita Dukes Smith
SurfKY News Director
Region 3 Vice President

 

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