TSC Talks! Part 1: A Rock and a Hard Place~Jadyn's Journey with Epilepsy & More with Liz Minda, R.N.
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Description
In this episode of TSC Talks, I spoke to Liz Minda, RN and Mike Robinson, former TSC Talks guest, drops in for the second half of our conversation. Liz has...
show moreLiz’s daughter had no further seizures until she was 4. When the seizures came back, they were severe grand mal status epilepticus seizures. Liz hesitated to medicate her daughter because as an RN, she was aware of the difficulty of finding an effective medicine as well as the myriad of side effects anti-seizure meds can cause. When the seizures continued, they eventually started meds which began a cycle of seizures increasing in both frequency and duration. In addition to meds, they put the child on the ketogenic diet. The grueling regimen did not help her seizure activity. Liz was desperate after even the rescue med Diastat began to fail to control the seizures.
Liz got her daughter into the Epidiolex study at Mass General and her daughter’s seizures diminished for a few months, but they returned. When the seizures started again, doctors increased her pharmaceuticals which restarted the med, seizure pattern. Liz grew frustrated with the medical establishment who seemed determined to throw prescription after prescription at them at great financial, physical and emotional cost. She found a neuro-epileptologist who helped her begin weaning her daughter from some of the prescription meds and helped her transition to Charlotte’s Web.
Liz connected with Mike Robinson online and Mike and others in the Compassionate Cannabis world assisted Liz in finding a balanced cannabinoid medicine that worked for her daughter. Mike and Liz discuss Epidiolex and the pharmaceutical interactions which do not seem to be compensated for when using that med. Liver issues can be serious when Epidiolex or any type of CBD is combined with certain medications. Mike shares, “Even though we were using the Charlotte's Web, Charlotte's Web wasn't enough to help us get off. We needed something stronger. We needed the Rick Simpson oil or full extract cannabis oil to get her off. Because we only had you know, once you get down to the miniscule doses of the pharmaceuticals, now you're really up against you know, fighting seizures, because you go with a really slow business and that's pretty much where we've stepped in, you know, it's right with the actual compassion provision.”
Both Mike and Liz believe vaccine injury is real. We ask you to keep an open mind while listening. Before you form an opinion, walk a mile with Liz and Mike, hear their stories and then decide. Liz comments, “and then people say, vaccines don't cause autism? Yes, they do, and here's why. When the brain heats up and you get a fever, you've got brain on fire” and she believes that “brain on fire” condition causes both seizures and autism.
TSC Talks is presenting this narrative and these views do not necessarily represent the views of TSC Talks. We are encouraging you as listeners, to "walk a mile" in Liz's shoes and understand the vast variability in the human genome which calls for a far more personalized approach to medicine than is currently the status quo.
Liz’s Links:
https://en.wikipedia.org/wiki/Brain_on_Fire
LinkedIn: https://www.linkedin.com/in/liz-minda-98b9b1126/
Facebook: https://www.facebook.com/profile.php?id=100011148612874
https://www.mikesmedicines.com/medical-marijuana/liz-minda-and-her-fight-for-jadyn-cannabis-for-epilepsy/
https://herb.co/news/health/rhode-island-cbd-school-minda/
https://digboston.com/medical-cannabis-special-treating-yourself/
https://www.wpri.com/news/special-reports/family-fights-to-change-law-says-medical-cannabis-should-be-administered-in-school/
Mike’s Links:
https://mikesmedicines.com
https://globalcannabinoidrc.com/
https://carouselchallenge.com
https://genevievesdream.com
https://nanobles.com
LinkedIn: https://www.linkedin.com/in/mike-robinson-~-cannabis-heals-256b3192/
Facebook: https://www.facebook.com/MikesEpilepsy
Instagram: https://www.instagram.com/cannabismymedicine/
Twitter: https://twitter.com/MikeRob47354384, https://twitter.com/MikeRob23307223
https://hightimes.com/culture/genevieves-journey-how-cannabis-helped-save-life-create-family/
https://www.imedpub.com/proceedings/cbn-the-cancer-fighting-cannabinoid-5528.html
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Author | Jill Woodworth |
Organization | Jill Woodworth |
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