February 3, 2014 we started the Little Angel on Charlotte’s Web, a medicinal marijuana developed for children with epilepsy. It is a very specific strain without THC (the psychoreactive — that’s what makes you high) and with increased CBD (cannabidiol, the medicinal, “healing” properties of cannabis). We are lucky, and we know this. We live in Colorado, where marijuana is legal across-the-board, but specifically where medicinal marijuana is available to children. We are lucky because The Realm of Caring, which developed this particular strain, is headquartered in Colorado Springs, approximately an hour and forty-five minutes from our home.
We’re also insanely lucky because we have water safe to drink from the tap, indoor plumbing, running automobiles and the funds to put gas in them, and money to pay for Charlotte’s Web. We are INSANELY lucky.
I work part-time in a clothing boutique, and I love it. Mostly. I refer to it as my lipstick job because I wear lipstick to go to work! I work with a small group of women I greatly like, and by-and-large I like most of the customers. What I really like is interacting with women: I am a true girl’s girl.
Last November a customer came in and we each said “You look familiar”: we finally placed the other and realized we recognized one another from a local therapeutic clinic where we take our children (where she’d taken her daughter the previous year). We’d never really spoken, just the token “hi” sort of thing, but we let it rip that day in the store. She’d been to the TED talk given by Joel Stanley (of The Realm of Caring), and she said to me that if she had a child with epilepsy she’d be putting her kid on Charlotte’s Web (aka CW) tout de suite. Peripherally I’d heard about it — how could I not? I have my ear to the epileptic ground (not really — we are so out of it because Little Angel’s epilepsy is so atypical that I always feel left out). But I’d dismissed it because the children who were being helped tended to have Dravet Syndrome, or at the least has myoclonic epilepsy: that means they had physical seizures. Little Angel had never had a physical seizure (these are called subclinical, when there is no physical indicator of the aberrant electrical activity).
However, I went home after that shift and exploded to the Hirsute Japanese (aka my husband and father of my children) “we have GOT to look into this.” So out came the computer and on went the TED talk.
We put the children to bed and came back to the computer, doing hours of research and talking with one another. That evening we completed The Realm of Caring’s confidentiality paperwork and started investigating how to get the Little Angel a Red Card (get him enrolled in the Colorado Medical Marijuana Registry). The hardest part of that was finding a prescribing MD: most traditional MDs will not because during their state licensing they’d agreed to not dispense (I may not have this precisely correct but this is what my memory is now telling me). When I called a few of the myriad local MMJ doctors’ offices, I was shocked how ill-informed (if not outright uninformed) many of them were, one of them threatening to turn me in for investigating getting a seven year-old a Red Card. Idiot.
Again, we got lucky. There was and is a waiting list for the CW — The Realm of Caring produces it so strictly that it adheres to traditional (FDA) pharmaceutical standards (in terms of + / -), but somehow there was a providential window and the Little Angel got right in.
Literally within the first twenty-four hours of his starting CW we noticed some improvements: his gross motor planning appeared to markedly change. He was attempting to climb any- and everything. His cognition did NOT ameliorate, so he didn’t appear to understand that he could not get his left knee up on X or whatever, and it was sadly comic to watch him lift that bent left knee fifteen times in a row, attempting to get it up on our (high) bed, for example. He is such a funny fellow, occasionally intentionally. ???
Within a few days we noticed improved eye contact: it was volitional, had duration, and appeared communicative. He was seeking people out to stand next to them and really peer into their eyes, not in a glassy-eyed, vacant way, but really looking into their eyes. Fantastic!
Because The Realm of Caring is not a medical facility, they cannot (and do not) prescribe dosage. Based on what other parents (and there are fewer than two hundred of us) are doing, we decided to start at .5mg per lb of body weight, and to increase every fortnight by an additional .5mg per lb of body weight. Because the other children all have physical seizures, their parents can tell immediately if the CW is helping — they can see a reduction in seizure activity. Little Angel’s seizures are all internal during sleep, with no outward indicator(s), so for us it’s all anecdotal. Parents had kindly, generously shared that if they’d increased the CW too high, the seizure activity actually worsened, so they would then immediately dial back the dosage. Helpful stuff.
Toward the end of Week 6 Little Angel had his first generalized tonic clonic (GTC), and then three days later another. The first was on a Saturday and we were getting ready to drive down to the Springs, actually, to fetch his next batch of CW, visit the gorgeous Garden of the Gods, and then have afternoon tea at the equally gorgeous Glen Eyrie Castle. Big Angel, Little Angel, and I were in the family room, Little Angel goofing around on the armchair. All of a sudden his body got tight, his neck bent with his chin in his chest, his arms were bent at his elbows, his hands holding the other, and he started physically twitching. I ran right over to him to touch him and talk to him, keeping a firm, still pressure on both his back on his one of his forearms. It lasted maybe one minute at most, and when it was done he got the cutest sly smile and then looked up, seeming “fine.” The same behavior occurred for the next seizure.
Those were not quite three weeks ago. Today at school he apparently had another seizure which caused him to fall down, and then this evening during dinner, with me, he had yet another. Again, his postictal thumbprint after the dinnertime seizure, at least, was another large sly smile, and it made me wonder if somehow the seizure feels good. As we finished his dinner I remembered a book I read many years ago called Lying Awake by Mark Salzman. It’s the story of a nun who receives the voice of god, her spiritual writings become wondrous, etc., yet modern, occidental medicine says she has epilepsy and these divine interventions are really seizures. She can be “cured,” but why would she want to be when “curing” her would eliminate her direct pathway to god. (This is all based on memory so pardon me.)
Anyway, it made me think about that, about the different affects of seizures. Little Angel’s subclinical status have literally and truly destroyed his brain and cognition, but not everyone with epilepsy has that debilitating and devastating outcome.
As of this writing, we’ll keep the Little Angel on the (much) lower dose of CW until his next EEG (in a fortnight). That will tell all of us if the CW is helping the seizure activity and if so, how much. Fingers crossed.
I am so crazy in love with this little boy: I would do anything short of murder (although it depends on the person …) to help him. He is delicious and sweet and cuddly and funny; I love the special uninterrupted face-to-face time as I change his diaper. I always sing to him and play kissing games. He smiles and giggles, and then pushes me away when he’s had enough. I love it. I cherish that concentrated one-on-one with him. I just want to help him.