When we were contemplating starting medical marijuana, I found myself wishing I could read the stories of other families using CBD (cannabidiol oil) so that I could know what to expect. There are few stories out there; most are in the form of videos and documentaries. And most of those don't go into detail about the ups and downs and the nitty gritty of what to expect day to day as you start a child on medical marijuana.
Any one story is just that--one story among what is always a range of different experiences. But one has to start somewhere. I hope by writing our story, that it will encourage others to write their stories so that one day it will be easy for those who come after to read many stories of many different experiences. Experiences of the nitty, gritty daily ups and downs of starting medical marijuana for the treatment of epilepsy.
BTW, please let me know if you write your own story of starting your child or yourself on medical marijuana for epilepsy or intractable epilepsy. I would love to link to your story here in this post. And also link to your blog from this blog. The more people writing their medical marijuana and epilepsy stories and the more people writing epilepsy blogs (in general), the better. We have to get the story of the experience of epilepsy out there the same way the story of autism or other conditions are out there. And to that end, one of my passions is encouraging other epilepsy families to write epilepsy blogs. But, back to what this post is about...
This post is the story of the first week of beginning medical marijuana (CBD oil). We began using medical marijuana with our 11 year old daughter with intractable epilepsy with the full knowledge and approval of our daughter's epileptologist (neurologist who specializes in the treatment of epilepsy). We began on the very first day it was legal to possess and use CBD oil in our state. We're using medical marijuana for intractable (aka drug resistant aka refractory) epilepsy--one of the "debilitating conditions" for which its use is legal in our state.
Day 1:
Wed, June 1
Absence seizures: 7
Awesome is not eager to try CBD oil for the first time. In fact, she's downright leery; before it ever touches her mouth, she's making awful faces in anticipation. Her oil is unflavored--or rather, it's just straight marijuana flavored. We were unable to buy the mint chocolate flavored oil for her because its base is coconut oil, and for Awesome, coconut oil sets off clusters of a seizure a minute for several hours. Awesome had already smelled the CBD oil earlier. No one can deny that it smells terrible.
Awesome opens her mouth, I put the syringe into her open mouth, aiming for under her tongue, push the plunger on the tiny syringe, and the 0.07 milliliters of CBD oil squirts out to form a small puddle under her tongue. She tries not to swallow or gag while I count to 30--approximating 30 seconds--to give time for the dark oily liquid--which smells earthy--rather like vegetation that has been left to rot in water for several days--to absorb into the mucus membranes under her tongue. Somehow she manages not to gag, swallows the remaining oil, makes a terrible face, and then chugs several big mouthfuls of chocolate milk. The CBD oil, I was told by those who know about such things, should really be chased with something high in fat--like a spoonful or two of full fat yogurt--but for now, until I can get to the grocery store, low fat chocolate milk will have to do..
Awesome declares, "Medical marijuana takes like rotten seaweed."
Her brother sitting nearby asks pointedly, "How do you know what rotten seaweed tastes like?"
She makes a face at him.
Because Awesome's super sensitive to medication, she's starting at only one-fourth of the normal starting CBD starting dose--which is half of the normal starting dose for sensitive children. Her doctor, who is very supportive, said to titrate CBD very slowly. So we are doing just that.
The first day we see no noticeable differences in behavior, except perhaps Awesome's a little more subdued than usual; no big differences in seizure count or other symptoms.
Day 2:
Thurs, June 2
Absence seizures: 8
After being woken early for her morning anti-epileptic drug (AED) Vimpat dose, which is given 3 hrs before she normally wakes, Awesome has an unusually hard time going back to sleep. When she finally does go back to sleep, she sleeps only for a short time and is soon up again. Is this a side effect from the CBD oil kicking in? We don't know.
In the afternoon Awesome is very tired and nauseated. Despite the fact that she'd eaten very well at both breakfast and lunch, we begin to wonder if perhaps she's hungry. She says she's not. Still, as the nausea continues, we insist that she eat something--she does eat...and the nausea resolves. Could the CBD oil be increasing her metabolism? We don't know.
Everything is a guess, an hypothesis, a wait-see. We don't want to read too much into anything but need to wait for patterns to emerge. Only then can we legitimately venture plausible interpretations with any real weight. And even then we're unlikely to know anything with certainty. Frankly, this is in the nature of living with epilepsy--even apart from trialing new non-prescription substances like CBD.
We can describe what we see, but interpretation of what we're seeing is another thing altogether.
Day 3:
Fri, June 3
Absence seizures: 26
A very bad seizure day--the worst in a couple of months. We're alarmed. Primarily aimed at controlling her big seizures, Awesome's AED (Vimpat) has always seemed to exacerbate Awesome's absence seizures in a dose dependent way. We wonder if CBD is changing the metabolism of Vimpat so that Awesome's Vimpat blood levels are going up--and in turn, the higher Vimpat blood levels are causing more seizures.
One day doesn't a pattern make. But still, it's concerning. We know we know nothing--or at least not enough to make a judgment. Our epileptologist told us that he knew very little about CBD oil and advised us, when we need help, to seek help from other epilepsy parents who are experienced with CBD oil. So we do.
A friend who runs a cannabis support group, after looking at our medication schedule, thinks we have Awesome's CBD doses bunched up too close together (11:00 AM, 3:30 PM, and 8:30 PM). She says the three doses of CBD need to be 8 hours apart from each other so that CBD blood levels remain steady throughout the day--at least until CBD has a chance to build up in the adipose tissue--the fat--of the body. How long it takes for CBD to build up in fat tissue varies from person to person. Once it does build up, then CBD levels stay steadier. Until then, we have to steady things out by spacing CBD doses evenly throughout each 24 hr period so we don't get rises and falls in CBD blood levels.
Working out a medication schedule had been very hard, given all the various parameters and limitations; now we needed to do a radical reworking. We spend several hours working out a new medication schedule. Starting that evening, CBD doses will now be spaced evenly throughout every 24 hrs--exactly 8 hrs apart (7:30 AM, 3:30 PM, and 11:30 PM). We hope this gives Awesome some seizure relief!
Day 4:
Sat, June 4
Seizure Free Day!!! 0 Seizures!!
Awesome has serious abdominal pain upon waking, and it continues all day long. She's almost incapacitated and lies moaning on the couch.
We haven't seen GI issues this severe since first reaching the first target dose of Vimpat. Back then the abdominal pain was so bad it totally incapacitated her, making it impossible for her to think or learn--disrupting her schooling. Normal life was impossible; she'd lain on the couch moaning for two days. We'd had to back off for awhile--reduce her Vimpat dosage and give her body a chance to adjust. It was only weeks later, that we could begin to titrate upward again. And we did so only in tiny increases after big break-through seizures.
Is it now possible that CBD is causing Awesome to metabolize Vimpat differently? Are her Vimpat blood levels rising? It seems plausible since we know that higher Vimpat levels cause just these kinds of symptoms with Awesome. We'd been warned that CBD sometimes causes changes in the way specific AED's are metabolized; in turn these metabolic changes cause changes blood levels of AED's. Because we knew this was possible, we'd had baseline Vimpat blood levels drawn before starting CBD.
But again, one day's issues don't a pattern make. We can't jump to conclusions or run off to ask for a blood draw order to check Vimpat levels based on having GI issues for a single day. In this--as in everything else so far--we must wait to see if this symptom is sustained over time before worrying about interpretation. We must simply comfort Awesome today and wait to see what patterns or symptoms become more constant.
Amazingly and much to our surprise, Awesome--despite her serious GI woes-- has a completely seizure free day! It's only the second seizure free day she's had in the last seven months. We are stunned. And over-the-moon happy! Absolutely elated! Could it be this easy? Our hope for the future has suddenly grown almost boundless.
I make the mistake of mentioning this wonderful news--the fact that Awesome went from 26 seizures one day to 0 the next day due to CBD--to friends on Facebook. After all, it's hard to keep great news like this to yourself! Everyone celebrates and congratulates. Which makes it all the harder when the illusion of success comes crashing down around us the next day.
Day 5:
Sun, June 5
Absence Seizures: 17 +
The day before, it turns out, was NOT the start of our seizure-free-with-CBD dream-come-true, but some sort of fluke. An aberration.
Awesome's morning is very difficult seizure wise. Her absence seizures are longish. But they are also sometimes very short. So short that it's often hard to tell whether to count the signs of flickering altered consciousness as seizures. In fact, it's so hard that I give up trying to figure it out and count only the seizures that are clearly seizures.
It's an exquisitely painful and disappointing day. I stay off social media because I can't bear to see any more congratulations on yesterday's seizure free day. We knew going in that very few kids get immediate results with CBD--for most it takes months to see the positive results. And sometimes experimentation with different strains and differing percentages of THC. We decide to try to remain optimistic and so decide that we prefer to think of yesterday's seizure-free day as a promise for the future...or at least as a good long-term sign.
Things get better after lunch, The seizures continue, but at a much slower pace, and the flickering altered consciousness is gone. Still Awesome's best friend counts 8 seizures as they play together that afternoon. By evening the seizure storm is over. Awesome is seizure free for the rest of the day.
Day 6:
Mon, June 6
Absence Seizures: 15
Another high seizure count day. In the morning in the first hour after waking, Awesome becomes very emotionally overwrought. She's unusually emotional--often on the verge of crying-- and that emotionality doesn't make sense in the context. We wonder if what we're seeing with the overwrought emotions is really partial seizure activity. But if so, the seizure activity doesn't generalize; instead, it resolves on its own. We feel like we've just dodged a bullet.
In the afternoon, Awesome goes to her best friend's house--her first outing away from us since starting CBD oil--and consequently, it's the first time that she's been given a dose of CBD somewhere else by someone else. She has only one little seizure in the afternoon. And then 6 little seizures in the evening.
In general Awesome is doing well--her GI system is fine and her energy level good. Those sustained symptoms patterns that earlier in the week we thought might be developing, apparently aren't.... We're getting hopeful again...which is apparently dangerous...
Day 7:
Tues, June 7
Absence seizures: 22
Complex partial seizure: 1
Complex partial seizure with secondary generalization: 1
Awesome has lots of absence seizures on waking. And then we are stunned when, while sitting at the breakfast table waiting for breakfast, Awesome has an aura and starts into a big seizure--a complex partial seizure. We're equally stunned when, a minute later, she comes out of the complex partial seizure on her own (without our having to use the emergency rescue drug, Diastat)! She is suddenly back to talking and interacting normally; her head and eyes are no longer out of her control. Just like that! This is the first time that one of Awesome's big seizures has ended on its own! The CBD oil is already accomplishing something that no anti-epileptic drug has ever accomplished for Awesome!! Or so we presume.
However, our happiness is short lived. A minute later Awesome slips back into a second complex partial seizures. In our experience, not only do Awesome's big seizures never end on their own; they typically continue a full 10 minutes past whenever we administer the emergency rescue medicine Diastat. Because of this--and because Awesome usually vomits during seizures--and once aspirated and subsequently developed aspiration pneumonia resulting in an 18 day hospitalization and the loss of half a lung--we've never had any incentive to wait to administer Diastat. In fact, there's every incentive NOT to wait to give Diastat.
Awesome's eyes close and she falls asleep--signalling the seizure's end as we are accustomed to seeing it. Awesome sleeps half an hour while we monitor her vital signs and stroke her back to comfort her in case she is aware in any way. She awakes very confused and agitated wth a mild language deficit (often she's unable to speak at all after a seizure, so a mild deficit is actually encouraging). But there's something new and unusual this time--she's seriously short-term memory impaired. We have the same conversation in which Awesome asks the same questions and we give the same answers over and over again; Awesome has no clue that we're in an interaction loop. The only thing that changes with each repeat is that Awesome becomes more and more agitated and distraught.
When she's not seizure-impaired, Awesome is a very normal, very bright, very verbal, very social child. Awesome's not the same child after a seizure. It usually takes her about 3 hours to gradually return to her baseline. It's often a very long, very emotionally overwrought, very language impaired, and very difficult three hours. Frankly, it's often exhausting both for her and for us.
We'd learned in Realm of Caring's Orientation to Cannabis Therapy Classes that an extra dose of CBD oil can be given as a rescue medication during or after a seizure. So we decide to try this now in hopes that we can keep another big seizure from happening (prevent a cluster) and also in hopes that we can help return Awesome to baseline quicker..
Miraculously, within 10 minutes, the extra CBD dose lifts the fog of Awesome's post ictal confusion, agitation, distress, memory issues, and language impairments. Gone. Just like that! Awesome is back to baseline. She's her normally awesome Awesome self again. And we parents? Well, we're totally blown away by the power of what we've just witnessed CBD do for Awesome!
However, things may not all be as clear cut as they first seemed. In fact, over the next hour as the dust settles and we start to process the morning's events, we realize that, to be fair, we have to consider at least two different explanations for why Awesome's big seizures might have ended on their own for the first time. First, of course, the CBD oil might just be working...or...second, the higher Vimpat blood levels we've hypothesized--caused by CBD changing the way Vimpat is metabolized--might just be causing the seizures to stop on their own (higher blood levels, better response). We'd like to think it's the CBD oil causing the positive change (especially given Awesome's other negative symptoms which we've been attributing to Vimpat); but only time...and eventually, under Awesome's doctor's directions, experimentation, will tell....
However, when it comes to post-ictal recovery there is no ambiguity. The extra dose of CBD is what caused Awesome's post-ictal impairments and symptoms to resolve so quickly and completely. There is no doubt that CBD showed great power there.
Based on the amazing display of the power of CBD in the post-ictal period, we decide we should increase Awesome's dose of CBD oil from one-fourth of the normal starting dose to one half of the normal starting dose (the normal "sensitive" child starting dose). We figure that there is no harm in going up to the normal "sensitive" child starting dose over the next few days. Part of our reasoning is that Awesome's big seizures are now coming at the rate of one every 10 days, and we'd like to can get enough CBD in her system to head off the next one ten days out.
But, of course, this increase could also cause problems--by further increasing VImpat blood levels.
We need hard data on Vimpat blood levels so that we're not dealing in pure conjecture. We head to our local Children's Hospital (where a blood draw order for a Vimpat blood level is already waiting for us)..
But, being the kind of day it is, as we walk into the building, sitting between us and the entrance is an ice-cream truck. Awesome is absolutely NOT allowed to have high glycemic index foods--and especially high sugar foods--on her special epilepsy diet (which has been very helpful in preventing seizures). But it's been such a terrible day and I believe enough in the power of CBD by now, that I give in. I buy Awesome ice-cream for the first time in a year. She's over the moon-happy. I meanwhile, vacillate between feeling like a great mom for buying my child a treat she's so happy about and feeling like the world's most terrible mom for buying my child a treat that may cause a seizure. It's a familiar epilepsy mom sort of emotional/moral quandary, but it doesn't make living and feeling it all any easier.
After Awesome's eaten her ice cream, as we're sitting in a deserted hall-way waiting to be called back into the lab for the blood draw, it's time for her afternoon dose of CBD oil.
And so, exactly one week after CBD oil became legal in our state, fully realizing that we might actually be the very first family ever to give their child CBD oil in our Children's Hospital building, I boldly pull the syringe loaded with medical marijuana out from our medicine bag and, right there in Children's Hospital, I give Awesome her afternoon dose of CBD oil--chased with a handful of pecans to keep her from gagging.. And I don't worry a bit about it. We are pioneers. I feel free. And happy. And right this minute, despite the seizures this morning, hopeful about the future.
It's going to be a long journey. And Awesome's NOT going to be one of those kids who miraculously become seizure free after a few doses of CBD--we've already passed that few doses mark without clear success. But we do have soft signs--like the first tender, fragile, uncurling stem and under-developed leaves pushing up out from a seed through the dirt--of success. We're determined to give CBD a good trial over the next six months, as Awesome's doctor urged that we do.
The story of what happened, continues here, "Medical Marijuana Journey, Weeks 2-5: Riding the Drug Interaction Roller-Coaster"
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