FAQs on Medical Marijuana with Elizabeth Aquino

My son Robert has benefited recently from CBD oil, a form of medical marijuana. Robert has a rare form of dystonia, and CBD has improved his spasticity and dystonia, as well as his general cognitive state. Many parents are beginning to consider using medical marijuana to ameliorate their disabled children’s conditions, so I thought Elizabeth Aquino, caregiver and advocate for medical marijuana, could answer some initial questions caregivers might have before initiating a conversation with a child’s doctor.

Elizabeth is a writer living in Los Angeles with her three children, aged 21, 17 and 15. Her oldest child was diagnosed with infantile spasms, a rare and particularly devastating form of epilepsy, when she was under three months old. The seizures had no apparent cause and were refractory to treatment, including 22 pharmaceuticals, two trials of the ketogenic diet and countless alternative therapies.

In December of 2013 when she was nineteen years old, Elizabeth began giving her daughter cannabis oil, and within weeks her daughter had her first seizure free period. In the two years since that first trial, seizures have been dramatically improved (90% fewer), and her daughter has been weaned 75% from two drugs. As a result, Elizabeth says, “I have turned all of my advocacy efforts in the epilepsy world toward educating people about medical cannabis and believe unequivocally that it holds enormous potential for refractory seizures and that access to it is of paramount importance.”

Stone: There's been a lot of discussion and excitement about medical marijuana in the special needs community lately. When we talk about medical marijuana and its use with disabled children, what form(s) of it would we be using?

Aquino: Medical cannabis is being used in several forms with disabled children to treat a myriad of diseases and conditions. It can be an oil-based tincture that is taken orally, used in g-tubes, vaporized and administered topically. It can be CBD-only, high CBD/low THC, THC-only or combinations of the two.

Stone: You're very involved with the special needs and caregiving communities through your blog--anecdotally, in addition to epilepsy, what conditions might be ameliorated by medial marijuana? What success stories have you heard?

Aquino: I've heard, literally, hundreds of success stories. Cannabis medicine is being used to treat epilepsy, cerebral palsy, anxiety, Tourette's Syndrome, depression, Multiple Sclerosis, cancer, autism, schizophrenia, ADHD, etc.

Stone: Are there any downsides to the use of medical marijuana that a parent may want to be aware of before initiating a conversation with her child's physician?

Aquino: At this point, initiating a conversation with a child's physician will probably NOT get you much feedback or information as physicians are generally far behind parents in this field. There are very active groups that have been doing the work for years -- literal grassroots efforts. Connecting with experienced parent experts and some of the cannabis pioneers is essential, and you would probably be doing much of the educating of the traditional physician yourself! Downsides of medical marijuana -- beyond the lack of accessibility in those states that don't have legalization laws -- include inconsistencies in products, lack of availability of the high CBD oils, cost and the fact that you will have to do a lot of tinkering on your own as responses to cannabis are highly individuated. 

Stone: Some states have legalized medical marijuana, some have not. How do parents get ahold of CBD or THC legally? What are the differences in availability between the two forms? 

Aquino: If you don't live in a state that has legalized some form of medical cannabis, you simply cannot get either CBD or THC easily. CBD-only products are available to be shipped from Colorado and perhaps a couple of other places, but those of us in the trenches believe that products with both THC and CBD are generally necessary to really treat many of the conditions/diseases. I'd add that nearly every single state has concerted advocacy efforts directed toward getting medical marijuana laws passed in some form or another, but it's an arduous process, and many of the states have very ignorant and slow-moving legislators. In addition, as long as the federal government keeps marijuana a Schedule 1 drug, the process will continue to only inch along.

Stone: I've heard that the concentration of active ingredients in CBD oil can vary from batch to batch and supplier to supplier. How can I be sure of finding a reliable and safe supplier?

Aquino: Again, I believe that parents -- particularly those that are very experienced -- will be your best resources. Facebook has many closed groups with amazing information and resources. If you live in a legal state and can get good products, you should also be able to find a reputable lab to test the product and make sure that it is what it says it is -- that being said, there are many reputable suppliers of cannabis that send relatively uniform products for reasonable prices. 

Stone: If a parent is thinking of having a conversation with their child's physician about medical marijuana's potential benefits, what should she or he know in advance? What's the best way to prepare for such a conversation? Are physicians generally open to such discussions, or is there controversy within the medical community? 

Aquino: As I mentioned above, it's probably going to be a difficult process to include your "regular" physician in a meaningful conversation about medical marijuana. I have found most to be "in the box" thinkers -- and despite the incredible success we've seen with our daughter's seizures, her physicians are, as a rule, not particularly enthusiastic. I do think this is changing, though, and I encourage parents to do what they think is best for their child, even if that means going against their physician's advice. I held that attitude even before learning about and using medical cannabis, and I firmly believe that my daughter would be dead or even more compromised if I hadn't been an equal and, sometimes, main, partner in her medical care. I'm a bit -- well, not just a bit -- of a rebel, and honestly, I don't really care what Sophie's neurologists think of our use of cannabis oil. 

About Elizabeth Aquino: She has been an active member of the epilepsy community, founding a non-profit foundation called PACE (People Against Childhood Epilepsy) that raised several million dollars for cutting edge research and eventually folded into CURE. She also served on the board of several non-profits serving the special needs community, including The Epilepsy Foundation of Greater Los Angeles and Realm of Caring. She worked for many years as a parent expert on national collaborative projects seeking to improve the healthcare of children with special needs and, specifically, epilepsy, has been a grant reviewer for the Department of Children and Maternal Health and, of course, an advocate for anything disability related. Visit her blog, A moon, worn as if it had been a shell.

Further reading on medical marijuana by Elizabeth:

AuthorJeneva Stone