Studies on pediatric Cannabis are rolling in and I want to put a handful on your radar and show you where you can find the rest. I’ll try to spare you my analysis because I want you to come to your own conclusions. I don’t believe in one size fits all. Some of us in our community may share the same diagnosis, but we don’t share the same circumstances. You live in a different state, have different resources, have a different understanding of life than I do. Your child is different than mine. Not every supplement or pharmaceutical effects everyone the same way. (Except vaccinations. They are completely safe for every single person on the planet. Insert eye roll.) Unlike setting a broken arm, treating epilepsy or autism or a wide range of neurological condition calls for very individualized treatment.

This requires parents to be very informed and involved in decision making. Maybe randomized controlled trials are where you find your next move. Maybe it’s in the story and eyes of another mother. You decide what feels risky or safe for your child in consideration of the options available that align with your values. I trust that only you can know what that is.

Dr. Margaret Gedde and Dr. Bonni Goldstein are the leading physicians in pediatric Cannabis. On the Realm of Caring’s website, you can find their retrospective cohort studies of epilepsy patients treated with Cannabis. No, they haven’t been published in a top medical journal, nor can they be found at the National Library of Medicine. This is what they saw in their day-to-day practice. So these results reflect different seizure disorders and the use of a variety of artisanal oils. For what it’s worth to you, below are their findings:

Dr. Gedde’s entire report can be found by clicking here and below is a brief summary:
- 107 patients, ages 6 months to 45 years (average age 9.9 years)
- 2/3 of patients used a high ratio CBD:THC oil
- 1/3 of patients used THC-A, a low ratio CBD:THC, or a combination

Dr. Goldstein’s entire findings can be found by clicking here. Summary:
- 112 patients, ages 1 to 44 years
- all patients used a high ratio CBD:THC oil (15:1 - 31:1, one patient taking a 6:1)

If published research is more your style, you can review studies on Cannabis and epilepsy here at the National Library of Medicine. You can also click here to learn more about actually including your child in a Cannabis clinical trial.

The research on Epidiolex led by Dr. Oren Devinsky (you know, the one treating Harrison Ford’s daughter?) has been of high interest and they are rolling it out as it’s collected. These are not the results of controlled trials. Those are still in progress and supposedly coming this year.** You can find the abstract they presented at the 2015 Annual Meeting of the American Epilepsy Society here. Summary:
- 261 patients, ages 4 months to 41 years (average age 11.8 years)
- all patients taking Epidiolex (pharmaceutical grade CBD only)
- 47% had a greater than 50% reduction in seizures
- 9% were seizure free within 3 months

The University of Alabama has also been releasing the results of their Cannabidiol Program. They presented their results at the annual meeting of the American Academy of Neurology and you can read their press release here. Of the 51 patients included, 50% responded with seizures declining between 32% and 45%.

Hmmm . . . okay. So maybe a little bit of my own analysis because I was triggered recently. Disparaging Cannabis, a neurologist told me that everyone gets excited when a new seizure treatment comes out and thinks it’s going to be the next magic bullet. But that each time the 30% of epilepsy patients who are intractable remain largely unhelped.

Even though they aren’t controlled studies, I think the above actually flies directly in the face of his conclusions. This quote is from a piece of research that both he and I refer to often: “Drug-resistant epilepsy is defined as a failure of two or more appropriately selected and adequately tried anticonvulsant medications to achieve seizure freedom for a sustained period of time in either monotherapy or polytherapy. Once this definition has been met, the likelihood that further medication trials will lead to seizure freedom is in the range of 5% to 10%.” This 2011 study from the European Journal of Epilepsy acknowledges that there is “sparse” data “rationalizing” all those combinations of medications they are putting our children on.

I wonder how many of us would put a part in our car that had a 90% to 95% chance of not working and a strong possibility of making the problem worse.

In fairness, I do see some parents post on Facebook that their child is seizure free on polytherapy. I’ve never met one, but I know they are out there. I guess they are that lucky 5% to 10%. I froze after my son failed his 2nd medication and was too afraid to risk horrifying side effects. But I wasn’t seeing cognitive declines in the kids I met on Cannabis. I saw the opposite. In consideration of my personal values, Cannabis actually felt safer. I don’t know what I would have done if it wasn’t an option. I really don’t. As the days, months, years seized on, I might have ate my own words and rolled the dice.

Or accepted a palliative position instead, which would have been devastating. Absolutely heartbreaking. But so are damaging medications that decrease quality of life and don’t stop seizures.

For families in this position, the above demonstrates that Cannabis can give their children safe and comforting options for a higher quality of life. I have unending gratitude for everything everyone is doing to advance pediatric Cannabis in any way. There is so much hope.

* If you are in San Diego County and want to participate in an IRB approved study about parents treating their children with intractable epilepsy with Cannabis please e-mail anthropologist Dr. Elisa Sobo at [email protected]

** Doh! Two days after this post G.W. Pharma released the results of their first placebo trial. And guess what? It works, duh. You can click here to find their press release since I’m not up for writing another piece. I was also interviewed by the New York Times this morning about the same which you can find here.