The Green Pill
I have been doing research into medical marijuana for reducing Lydia’s seizures. It turns out that even in Oregon you can’t just get a card and walk into a dispensary and expect to get what you need. It is more complicated than that. Before I write more let me just make it clear: I have not strategically tried medical marijuana for Lydia yet. I’ve been doing a lot of research. Keep in mind that everyone is still trying to figure it all out and that my information is coming mostly from friends, facebook forums and other parents.
I’m not going to spend much time arguing whether or not marijuana works to reduce seizures in some people. It most definitely does. By how much, for how long and with what side effects? No one knows. I’m not going to say it is 100% safe because there are studies that say it isn’t.
I think total seizure control with medical marijuana is very rare. Even the poster child for pediatric medical marijuana, Charlotte Figi, still has occasional seizures. And a lot of parents on the forums have mentioned a “honeymoon” effect where they have initial seizure control and then the seizures come back stronger, scarier, for a time. Thankfully I haven’t read any stories where there have been permanent increases in seizures and I’ve read quite a few stories of parents who find that marijuana has helped to increase cognitive functioning, reduce seizures and improve sleep in their kids with long-term use. For kids who’ve tried a dozen pharmaceuticals with horrible risks and side effects, had surgeries, keto diets…and whose only other option is already just about the worst possible outcome with unstoppable seizures and never developing beyond the level of an infant…well I just can’t say that trying marijuana is going to be any worse.
So, first off the consensus seems to be not to use the legal CBD oil you can buy online. Even if it is not full of dangerous heavy metals, it is made from hemp, not cannabis. Hemp refers to the industrial plant that is used to make products like cloth, lotions, paper, etc, and it doesn’t have the same medicinal chemicals (flavonoids, terpenes, terpenoids, etc) that are in cannabis. Also, there is a strong argument against using CBD on its own. I don’t know if this is just the purists making this argument but many people say marijuana is designed to work synergistically with multiple chemicals and chemical reactions taking place (CBD is balanced by THC and vice-versa.) Plus organic hemp CBD is outrageously expensive. Plus CBD on it’s own can give you a terrible stomachache. On an important side-note, most of the legislation bills being put forward legalize only the CBD part of marijuana, which is a horrible thing for marijuana as medicine. http://www.ladybud.com/2014/01/27/why-no-parent-should-support-cbd-only-legislation/
If you don’t live in a legal state, your options are very limited – obtain marijuana illegally and risk jail time or… move. In fact, there is an ‘underground exodus’ of families moving to Colorado to obtain Charlotte’s Web (also called R4). Whole families are uprooting or having to split up in order to just get on the waiting list for Charlotte’s Web. And the strain is super difficult to obtain from anywhere but the Realm of Caring folks in Colorado. But it isn’t the only strain that works for seizures!
In Oregon you can apply for a medical marijuana card through the state. It’s not cheap, but with a card, you can legally visit dispensaries (like pot 7Elevens), or grow, or designate someone to grow for you. A part of wanting the card was so that I could openly talk about this adventure, feel comfortable asking questions, etc. So I am jokingly calling this my $500 blog post.
- Birth certificate ($23.25)
- Social security card (had it)
- Oregon ID card ($44.50)
- Notarized document stating that I am her guardian ($10)
- Copies of paperwork to send to clinic ($3)
- Fee to clinic to sign off on physician paperwork ($155)
- Sending application in certified mail ($20)
- Cost of application to state ($250)
Grand total: $505.75 – Yikes. And we haven’t even bought any weed yet!
So what’s next? Well there is a lot going on in the world of marijuana that I have no understanding of: hash, crumble, vaporizers, patches, juicing, etc. I can’t speak to any of that. My understanding has centered around two options: activated mj oil (high CBD/low THC) and acidic mj oil (THCa). The best place to start may be with THCa oil because it gives a minimal high or none at all if prepared correctly. However it sounds like people who’ve had success have needed at least some activated high CBD oil in addition to THCa oil. I’m not sure about the reverse. I get the sense that the most successful cases over the long term have been with kids receiving both forms of the oil, but this is just my impression from reading one facebook forum.
The guide to make both oils is here from Epsilon Apothecaries. I’ve looked through a lot of recipes. This is by far the cleanest, most thorough approach and at least a handful of families have used it to reduce seizures in their kids with good results. Plus the author of the guide, David Mapes, is one of the most generous and knowledgeable people out there working with medical marijuana. I messaged him to ask if he minded me sharing his recipe on this blog. He said to “let folks know they can contact me directly if they have additional questions, concerns, etc.”
The costs to make the oil roughly break down into: $50-$150 for kitchen supplies depending on what you already have, $120 for the organic alcohol (some people do use Everclear…) and whatever the going rate of an ounce or two is in your area (~$240 over here). Google Weedmaps or Leaffly for dispensary menus. What strain to start with? Possibly a mix to get the widest range of helpful chemicals, as not all chemicals are in all strains. But Cannatonic is a good good place to start for seizures, so I’ve heard. But remember that once you find a strains or mix of strains that work, the challenge will be duplicating that winning combo – growing conditions, harvest time and storage can affect the chemical composition, let alone the availability of the strain(s), or simply random genetic variability. It is a good practice to get each batch of oils tested for their chemical composition. There are labs all over by me that do it no questions asked. Lastly, there is an argument that you should constantly change up your strains to keep the patient’s tolerance low.
As for dosing, that is a topic of debate. Some argue for mirco-dosing- .01mg/lb. And some people claim there was no effect until they reached 2.0-3.0 mg/lb. No one really seems to know. But everyone agrees you should GO SLOW and titrate up only very, very gradually. Also, there are drug interactions to consider. Most kids with intractable seizures are already on a mix of AEDs and marijuana does change the way they are processed by the body. Just go slow!
Oh and although you can’t find THCa oil in the dispensaries (at least not that I know of), some of them have high CBD oil. Um, I’ll take a stab that CO2 extracted oil is going to be the cleanest but I can’t remember where I read that. If you’ve got the THCa oil going and you are ready to add in the CBD oil, or if you just want to start with the CBD oil and see how it goes, here is a good, there is an easy dilution recipe from CannaDad’s Blog.
If one strain doesn’t work it might be worth trying another. Get everything lab tested, if you can. Take copious nerd notes. Track everything- strain type, seizure frequency, dose, other medications, child weight… Share your finding with the community because everyone is desperate for more information at the moment.
With all that I’m not saying that I will try medical marijuana for Lydia and I’m not saying you should either. I’m not sure if her neurologists can refuse to treat her or if the county can refuse services for her despite having a state-sanctioned card. I need to subtly assess those risks before making any decisions. But I believe it is within my rights to at least tell you all I have learned. Especially my fellow desperate parents, because we are in this together.
For question that you don’t want to leave in the comments, my email is: writedanae(at)gmail