Kristin & Shelby – Fighting Dravet Syndrome

 

“I saw a change almost immediately. I can’t even explain … I can’t even describe it, but it was … It was like a light started coming back into her eyes.” This is how Kristin Wilcox describes the effect a cannabis-infused drug given to her daughter, Shelby Mathews, during a clinical trial on cannabinoids for Dravet Syndrome. Kristin and Shelby are from Kentucky, and the state is now voting on Senate Bill 18, which will decide whether or not medical marijuana will be available for those in need.

Dravet Syndrome; Epilepsy; Kentucky; Medical Marijuana; Cannabis' Legalizing Cannabis; Kristen Wilcox and Shelby Mathews
Kristen Wilcox and Shelby Mathews – fighting for medical marijuana to be legalized in Kentucky. Shelby suffers from Dravet syndrome, a form of epilepsy.

We have spoken and are currently speaking to many patients, parents and doctors on using cannabis for epilepsy. We also have an entry on why cannabis may be used to treat epilepsy. Here are 5 main reasons why Shelby may benefit from cannabis-based medications:

  1. Cannabidiol (CBD) blocks sodium channels when in high concentrations, which antagonizes both CB1 and CB2 receptors. This means that CBD may have anticonvulsant properties.
  2. CBD affects the vanilloid receptors aka the TRPV1 receptor. This receptor is responsible for the detection of pain and heat, as well as regulating body temperature. Desensitizing the TRPV1 receptor with CBD may reduce neuronal excitability.
  3. Epilepsy affects calcium channels – learning how CBD can control calcium channels may give us an idea on how to reduce epileptic seizures.
  4. Many people who suffer from epilepsy may have mutations in the liver enzyme cytochrome P450 (CYP450), CYP2C9, CYP3A, CYP2C19, and CYP2D6. All of these enzymes are responsible for the metabolism of many anti-epileptic drugs (AEDs) like Clobazam. Unfortunately, figuring out which enzyme is causing a particular person’s seizures can be difficult, and can mean using hundreds of potentially ineffective pills before finding one that works. CBD also inhibits these enzymes, but in a less damaging manner (at least, according to current evidence – we don’t know all about CBD as of yet).
  5. Continuing on from above, those suffering from extreme forms of epilepsy such as Dravet Syndrome are often prescribed dozens of different kinds of pills. Many of these pills are benzodiazepine-based (e.g. diazepam/Valium), which are addictive and can cause all sorts of liver and kidney damage. Opioids may also be prescribed for pain, as well as barbiturate-based drugs. Assuming a person with a seizure disorder  lives to the age of 70, they will likely have taken an average of 25,000 pills in their lifetime. Cannabis-based medications may help reduce this number significantly.
Stop the Seizures epilepsy poster.
Some of the patients who suffer from epilepsy & who may need cannabinoid-based medications.

Many people may ask, “Well, you can get CBD from hemp legally. Why not use that for epilepsy?” Well, first of all, hemp can only contain a maximum of 0.3% tetrahydrocannabinol (THC), legally-speaking. This is not likely enough for maximum therapeutic effect. It seems that some THC is needed in order for CBD to work properly. Second of all, many hemp-based products do not contain the amount of CBD they claim to have. And third of all, many hemp-based products may come from places where testing for pathogens, pollutants and many other things are lax or non-existent. This makes such products the very opposite of “medicine”, and could in fact be rather damaging.

So, for the likes of Kristin and Shelby, it looks like well-made cannabinoid-based medications, ideally from actual cannabis plants, is ideal. Let’s hope that the two do not have to move state to get the medicine Shelby requires, and that Kentucky sees sense and legalizes medical marijuana.

Kentucky Medical Marijuana/Cannabis Poster.
House Bill 166 – the bill to legalize medical cannabis in Kentucky.

 

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