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Illegally Healed: Cannabis Oil Saved This 11-Year-Old from a Rare Bone Tumor

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This article was written by Julie Hambleton B.Sc. Julie is the co-founder of The Taste Archives

Epilepsy is much more prevalent in America than many of us realize. The Epilepsy Foundation estimates that anywhere from 1.3 million to 2.8 million people have epilepsy, with 150,000 new cases being reported every year. The incidence of the disorder is higher in children, and while some eventually grow out of it, many will live with it for their entire lives. (3)

The problem with this is that sometimes conventional treatments don’t work, while unconventional treatments like marijuana that do are either illegal entirely in that state, or not allowed to be prescribed to children. These are the unfortunate circumstances for the majority of epilepsy sufferers who are under the age of 18, despite medical marijuana working well for so many patients. Thanks to this little girl and her family, this is all about to change.

Riley’s Story

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At a very young age, now nine-year-old Rylie Maedeler from Rehobold Beach was diagnosed with extremely aggressive and rare bone tumors. After receiving surgery to remove those tumors, she then began having constant focal seizures, also known as partial or epileptic seizures, either from the high blood loss from the surgery or a potential stroke. (2)

Rylie first came into contact with medical marijuana as treatment when her mother heard that the oil could help slow tumor growth, protect Rylie’s nerves, and help to regenerate bone after the loss from surgery. After managing to acquire some cannabis capsules, her mother quickly realized that they reduced her little girl’s symptoms without causing the side effects of other medications – ones that often left Rylie bedridden.

Unfortunately, the family was devastated to find out that medical marijuana was not approved for use in children in their home state of Delaware. They tried to ween Rylie off of the medications, not wishing to discuss in interviews how they obtained the drug in the first place, but as soon as they did that, her seizures and their side effects came back with a vengeance. (7)

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Not wishing to give up, they got to work straight away to change this through an initiative known as Rylie’s Smile Foundation to get medical marijuana approved for children in Delaware so that kids like Rylie can live normal lives and do not have to suffer any longer. (2)

Rylie’s Law

Previously in the state of Delaware, only those aged eighteen and up were able to have medical marijuana-based oils prescribed to help manage hard-to-treat epilepsy and dystonia. Rylie’s Foundation worked tirelessly to introduce Rylie’s Law, or Senate Bill 90, which sought to change that, and it was unanimously passed in the house in June. Now, kids like Rylie can receive the medications and medical marijuana products they need to deal with the intense pain and trauma that they endure every single day. (2, 4)

Current Status of Medical Marijuana in America

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There are currently 29 states that have legalized medical marijuana in the United States. Eighteen of those states have approved the use of CBD for the treatment of epilepsy, several for the treatment of epilepsy in children.(3) These states are:(6)

  • Alabama – Carly’s Law
  • Florida – Charlotte’s Web
  • Georgia – Haleigh’s Hope Act
  • Indiana – HB 1148
  • Iowa – SF 23060
  • Kentucky – SB 124
  • Mississippi – Harper Grace’s Law
  • Missouri – HB 2238
  • North Carolina – HB 1220
  • Oklahoma – HB 2154
  • South Carolina – Julian’s Law
  • Tennessee – SB 2431
  • Texas – SB 339
  • Utah – Charlee’s Law
  • Virginia – HB 1445
  • Wisconsin – AB 726
  • Wyoming – HB 32
  • Delaware – Rylie’s Law

Many of these bills were passed thanks to the tireless efforts of the children suffering from conditions like Epilepsy and their families. Rylie and her family were no different, and put in the work to push Rylie’s Law through the Delaware house of commons.

Medical Marijuana and Seizures

The impact of medical marijuana for seizures is not simply anecdotal – science-based evidence exists that confirms marijuana can be highly beneficial for people, including children, who suffer from seizures, especially for those with conditions that are difficult to control. These conditions include (1):

  • Epilepsy
  • Lennox-Gastaut Syndrome (LGS)
  • Dravet syndrome

Some studies have shown that cannabidiol (CBD), a non-psychoactive compound of cannabis can help to control seizures brought on by epilepsy and other conditions. (1)

Three major studies have been done that focused on the compound in oil-based form in the newly developed drug Epidiolex, which is made 99% of CBD. In one open-label study (no placebo), 214 people between the ages of two and twenty six who had epilepsy but were not responding to other forms of treatment received Epidiolex.

Throughout the course of the study, participants saw on average a fifty-four percent decrease in the number of seizures experienced. In the two double-blind, placebo controlled studies, children participating saw a forty percent reduction in seizures. (1)

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How Does Marijuana Work For Seizures?

Currently, the exact mechanism for how cannabis controls seizures is not well understood. There are only theories, many of which revolve around THC, the other active compound in marijuana, and CBD working together to control and inhibit the receptors and feedback loops responsible for excessive neuronal excitation i.e. seizures.

One way scientists think this occurs is by decreasing the influx of calcium and increasing that of potassium into the cells to control the muscular convulsions and contractions. More research is still being done to fully understand just how marijuana decreases epileptic seizures. (1) (2)

The Bottom Line

Despite the growing scientific evidence, there is still a lot of work to be done involving treating epilepsy with marijuana, especially in regards to children. As more science develops, the hope is that more and more states will change their laws, as well, to allow kids like Rylie a chance at living the happiest, most normal life that they can. Rylie and her family are proof not only that change can happen, but it needs to. Thanks to them, thousands of children in their state now have access to a treatment that can actually work.

As more everyday people begin advocating for CBD and epilepsy treatment, and supporting both the scientists behind the drugs and the families who desperately need them, the sooner that change will come. If it is not available in your state, research how you can get involved with existing programs. If there aren’t any, then this is your chance to make a difference in your community!

Sources:

  1. Medical Marijuana and Epilepsy. (n.d.). Retrieved October 31, 2017, from https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/other-treatment-approaches/medical-marijuana-and-epilepsy
  2. Rylies Smile Foundation. (n.d.). Retrieved October 31, 2017, from https://www.facebook.com/pg/Ryliessmile/about/?ref=page_internal
  3. Epilepsy Statistics. (n.d.). Retrieved October 31, 2017, from https://www.epilepsy.com/learn/about-epilepsy-basics/epilepsy-statistics
  4. Rylies Law to become Law | Rylies Smile Foundation. (2015, December 10). Retrieved October 31, 2017, fromhttps://ryliessmilefoundation.org/rylies-law-to-become-law/
  5. Maa, E., & Figi, P. (2014, May 22). The case for medical marijuana in epilepsy. Retrieved October 31, 2017, fromhttp://onlinelibrary.wiley.com/doi/10.1111/epi.12610/full
  6. 18 States with Laws Specifically about Legal Cannabidiol (CBD) – Medical Marijuana – ProCon.org. (n.d.). Retrieved October 31, 2017, from https://medicalmarijuana.procon.org/view.resource.php?resourceID=006473
  7. Gordon, J. (2016, April). From Rylie’s Law to Rylie’s Smile. Retrieved October, 2017, from https://ryliessmilefoundation.org/wp-content/uploads/2016/04/KidStuffDelawareBeachLife11.pdf

Image Source: 

https://i2.wp.com/cdn3.themindunleashed.com/wp-content/uploads/2017/09/Rylie-Maedler-Tackles-Cancer-10.jpeg

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Julie Hambleton

Julie Hambleton

Julie Hambleton has a BSc in Food and Nutrition from the Western University, Canada, is a former certified personal trainer, a competitive runner, and a staff writer at The Hearty Soul.
Julie loves food, culture, and health, and enjoys sharing her knowledge to help others make positive changes and live healthier lives.

Check out the history, food, and culture site she runs with her twin sister, The Taste Archives , and connect with her on Instagram , Facebook , and on Twitter!
Julie Hambleton
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