Cannabis and Lennox-Gastaut – A Kynd Review

Twelve years ago, Tony Alvarez and his wife welcomed a beautiful baby boy. Like many new parents, they celebrated their blessings and looked forward to milestones like school performances, Little League games, weekend barbecues, and family time. But within just a few months of their son’s birth, he was diagnosed with two syndromes that affected his cognitive function. At age seven, he was diagnosed again, this time with an epilepsy disorder called Lennox-Gastaut Syndrome, which appears in childhood and presents with random seizures. It was the beginning of a long road of prescription medications that would prove to be as damaging in side effects as they were mixed in success.

This is the path that led the Alvarezes – desperate for something that would truly help their son – to cannabis. And this is their story.

The Reality of Diagnosis

“The worst part of this epilepsy is what it was taking from our son,” Tony wrote in a letter addressed to Mynt Dispensary and Kynd Cannabis Company. “Progressively he was changing and becoming a different child. No longer could he stay awake during the day. He would struggle to make it though a day at school without becoming so lethargic that my wife or I would have to pick him up midday. Physically, he degraded to the point that he could not sit up on his own, let alone stand up like he used to. He would not roll or scooch on the floor. He wouldn’t even lift his hands to his mouth to feed himself. His cognitive ability diminished significantly as well. He would not babble, make signs to communicate, or pay attention to any of his favorite toys or movies. He was simply not the same child he used to be.”

Managing their son’s seizures meant a mix of drugs typically prescribed to epileptic patients, including phenobarbital, levetiracetam, lamotrigine, rufinamide, and clobazam, plus diazepam and midazolam for emergencies.

“We even tried the ketogenic diet,” Tony wrote, “which has been known to be successful for some people.”

But nothing was helping their son.

Grasping at Straws

“My wife and I knew that if we were going to help our son we would need to find another solution,” Tony wrote. “That is when my wife started networking with other parents of children with epilepsy and with Lennox-Gastaut in particular.”

What she heard was encouraging.

“She found parents who were trying medicine that was not prescribed,” Tony describes, “but showing promise in treating seizures. It was CBD. The stories we heard were like an underground secret where children were having extremely reduced numbers of seizures or cessation of seizures altogether. It was hard to believe. However, upon meeting a few families and attending a few seminars, we found that many of the stories were true.”

The turning point for Tony and his wife came with the testimonial of one family in particular. “This family stated, ‘We got our child back,’ wrote Tony. “We had felt like we had lost our son and the person he was becoming. [That sentiment] resonated and she knew we had to try this medication.”

Finding Hope

The next challenge for the Alvarez family was figuring out how to access the medicine. “One way that kept popping up was to self cultivate,” Tony wrote. While they were willing, the start-up costs – totaling in the tens of thousands of dollars – was prohibitive. “We simply didn’t have access to that much capital for a medicine we didn’t really know would work for our son,” he wrote.

And then they learned about Mynt in downtown Reno. “In following families with children suffering from epilepsy, my wife came across the Hempel family. She wanted to talk to people who had experience with children with epilepsy and found that they were part of the Mynt dispensary.”

Tony’s wife collected reports and notes from their son’s neurologist and presented it to the team at Mynt. “After some collaboration we started our son on a basic tincture [created by Kynd Cannabis Company] with the appropriate ratios of CBD:THC,” Tony writes. “From that point, Kynd, along with guidance from our neurologist, adjusted the ratios, concentrations, and plant strain to form a custom tincture for our son. That was in 2017. In the relatively short time that our son has been on Kynd’s CBD tincture, we have seen a progressive and positive improvement in both the number and intensity of our son’s seizures. This has allowed us to take him off of one of his previously prescribed seizure medications. Most encouraging though is the improvement in our son’s cognition. He is more alert and energetic, less lethargic. He is becoming more vocal, animated, and communicative. His improvement has been so successful we have been able to take him off of a seizure medication that we felt was making him lethargic. In short, we are getting our son back and it has been a tremendous gift.”

Fighting for Families

With its federal classification as a Schedule I controlled substance – lumping cannabis in with heroin, acid, and methamphetamines – scientific research into this amazing plant is effectively blocked. For families like the Alvareses, that leaves question marks, red tape, and reliance on anecdotal evidence only. Parents deserve access to medications that can help their children – the kind of help that comes without traumatic side effects. And that’s why we’re committed to seeing cannabis legalized not just at the state level, but federally too. Opening the door to evidence-based research will help so many people. And the Alvarez family is just one example.

“Without the continued support of Kynd and Mynt, we wouldn’t be able to get our son back,” Tony wrote. “The excitement and joy they get at hearing our small steps to victory let us know we aren’t alone. We will continue this direction of care with the hopes of taking him off another seizure medication within the next year. We will also continue to celebrate these small, but important steps. Thank you Mynt Dispensary and Kynd Cannabis Company.”

To the Alvarez family – thank you for sharing your story. We are touched beyond words, and we are hopeful for your son’s continued positive progression.