What I Learned From the Epidiolex Trial

Many of you may wonder if waiting for Epidiolex is the best option. Perhaps learning from my experience will help your decision.

GW Pharm

Right before I called it quits with pharmaceuticals, our neurologist offered us a coveted spot on the first trials of Epidiolex.  If you are unfamiliar you can read here. Epidiolex is the pharmaceutical version of CBD currently undergoing FDA approval in the USA.  It is manufactured in England by GW Pharmaceuticals, the makers of Sativex, (or nabiximols in generic speak) which is a 1:1 THC:CBD spray marketed for Multiple Sclerosis in many countries.  It has been available in the UK , Canada, and other countries since 2010.  In 2014 they began trial phases of the 50:1 CBD:THC pharmaceutical aimed at treating intractable epilepsy in children.

Conditions of the first stage trial included, being on at least one other AED (anti-epileptic drug) for at least 6 months at the same dosage.  We barely qualified since I had reduced Ruby's Keppra 6 months previous.  When offered this spot I had decided the morning before the appointment that we would be weaning Keppra and discontinuing pharmaceuticals and terminating our care under a neurologist.  But this threw a kink in the chain.  So after much stress and deliberation we decided to try Epidiolex.

I had researched many other parents experiences with Charlotte's Web, Hailey's Hope, and Jayden's Juice, and was ready to move forward, but at that time those were difficult to obtain unless you lived in Colorado or California.  My family felt it was "safer" to try a pharmaceutical version and certainly under the care of a neurologist was their preference.  So I considered all options, this seemed to fall in my lap at the right moment and although I wanted to move right then to Oregon, I knew it would take a few months of logistics to get everything sorted.  So I  sucked it up and we signed on with high hopes.

The initial dose was 5mg.  Looking back I should have realized this was a problem but frankly I was so tired and exhausted of thinking and researching that I just surrendered to the process.  Ruby did not experience any significant relief in seizures from this dose.  Over the next 3 months her dose was increased to 50mg a day!  They even had to put in a special request to increase the maximum allowed dose.

Now I will say that apparently there were some kids who this did "work" for.  I do not know their circumstances and do not know if this was a long term result.  But our experience is that starting dose about what we take now!  I am a firm believer that less is more.  This is especially true when a body is clean and thriving.  If  body processes are bogged down by many pharmaceuticals, a "dead" gut, or both, it will seemingly need more of a drug simply because it are unable to use it effectively.

Several nights Epidiolex seemed to make things worse.  Of course, hindsight this makes complete sense since her p450 mutations also include CBD as a substance she cannot process properly, especially at high doses, and especially one laden with foreign matter.

What I mean by that is, although Epidiolex is a "natural" substance and is derived from actual cannabis plants (not synthetic), it is processed and adulterated by removing some of the THC .  In addition, the carrier is probably ethanol, propylene glycol and who knows?  I was unable to find inactive ingredients listed formally.  These are the inactive ingredients in their Sativex formulation.  I did write them to find out from the source and will post that here when I receive a response.  But frankly I don't care.  It isn't organic, it isn't a fat, and if there are any dyes or flavors added I am pretty sure they are not organic as well.

My summary is this:  Epidiolex may or may not be available to you depending on what country you are in.   But nearly EVERYONE has access to Charlotte's Web, Hailey's Hope, and Palmetto Harmony.  Others have access to local CBD oils made in their state or country by people who are affected on a personal level with epilepsy or other ailment that will be happy to explain their extraction method and carrier oils.   Start with a much smaller dose then 5mg.  Not matter how much your child weighs.  See more on dosing here.

Interesting follow up reading: