The other day, a video popped up on my Facebook memories. It was from a year ago, capturing the first time Solly said, “no!” It may not seem like much, but we were so thrilled that, at age 5, he was finally (finally!!!!!) saying “no” appropriately and unprompted.
This video was taken roughly a month and a half before we began our trial with medical cannabis. Since then, Solly has been communicating – both speaking and using augmentative and alternative communication (AAC) – so much that it seems hard for us to remember the time when we ached for him to be able to tell us what he was thinking or what he wants, so when these memories pop up on social media, it helps us to recognize how far he has come in such a short time. While he had a handful of words before medical cannabis, we still struggled to really understand his preferences, what he wanted to do, and what he wanted to eat.
In mid-March of 2020, we had our first appointment with Dr. Bonni Goldstein, which kickstarted our trial with cannabis. I wrote a bit about our experience with CBD and THCa a few months later, when we first saw an unbelievable explosion of expressive speech. Shortly after writing the blog post, keeping up with our experimentation flew off my plate as I became hyper-focused on Solly trying to get an IEP before the start of school, deciding to pull him from public school, feeling like I was thrown in the deep end of the pool without knowing how to swim as I navigated putting together and teaching a homeschooling curriculum while being the primary caregiver, home therapist, medical coordinator, Mom to both Solly and Bea, and so much more.
Once I got my feet back under me and got into the groove of homeschooling and more organized with our day-to-day, we jumped back into our trial-and-error adventure with medical cannabis.
What happened next
Back in September, while we were trying THCa for Solly’s sensory-seeking and sometimes self-harming challenges, we simultaneously participated in a three week intensive at NAPA Center. Usually during our time at NAPA, Solly is high-energy, powering through a three- or four-hour intensive with a huge grin on his face, constantly socializing with his therapists and eager to play games with him as they worked on his strength, coordination, and physical abilities. During this intensive, however, he got so tired to the point where he looked like he was falling asleep during his last hour. Throughout the course of the day, his face would redden, he’d have trouble holding up his body, and getting him through the final minutes of his intensive day was a struggle. Before giving up completely on THCa, I changed his dosage from 3 drops to 2 drops without seeing any noticeable changes to Solly’s fatigue. Knowing this version of Solly was not typical, even during a grueling three week intensive, I decided to drop THCa altogether.
Two more months passed before I got myself together to email Dr. Goldstein to apologize for our lack of engagement and ask to get started again. I explained to her what had happened on the THCa and also some things I was noticing while homeschooling Solly – a real struggle in focus and a continuation of his self-harming sensory-seeking behavior, both of which were impacting his learning. She quickly responded, suggesting that THC/THCa doesn’t seem to be the right fit for Solly, but since he did so well with CBD, we should try compounds more closely related to CBD to see if they will address some of the areas where Solly could use some support, namely: focus, attention, and sensory-seeking behaviors. We decided to give the cannabinoid CBG a try and ordered a small vial of Flower Child’s CBG tincture.
I didn’t notice any immediate changes after we started Solly on CBG – good or bad. Dr. Goldstein had Solly start on a very low dose of 2.4 mg and, similar to our trial of CBD and THC, she encouraged us to increase the dose every 1 – 2 weeks if we saw no negative side effects.
Once we got to a dose of 7.2 mg, we saw changes. While I still had to redirect him to keep him on task, Solly had better focus when we had our homeschooling sessions. He started interacting with an online educational series that I’ve included as part of his curriculum, and he could sit and watch it without me sitting beside him. But the biggest benefit was surprising to me: more speech! The day after we’d increased his dose to the 7.2 mg level, we started hearing new words and phrases. For example, I brought a basket of laundry into the family room where Solly was sitting, and he exclaimed, “laundry!” I began to hear new, completely unprompted words – “apple cookie”, “barn”, “puzzle” – and new sounds – “s”. He repeats nearly everything we say, though not perfectly, and has begun to narrate our day. He’s also making more headway using his AAC talking device.
I’ve also noticed some cognitive changes, as well. Most recently, he started drinking from his straw cup throughout the day (previously, we’d have to beg him to take a sip from a straw during meal times: he preferred an open cup) and has even started insisting that he feed himself with his fork, including trying to independently load his fork with food.
We’re now on a dose of 12 mg of CBG (in addition to our regular dose of CBD), and hearing new words every day. I’m planning to continue adjusting his dose of CBG until we cease to see benefits or start to see any negative side effects.
Dr. Goldstein works with each patients on a year-by-year basis and our first year ends with her next month, in March. Because I believe there is still room for medical cannabis to support Solly’s development, I’ve already renewed our relationship with her for at least one more year and I can’t wait to see how else we can help Solly with medical cannabis.