After our daughter Awesome developed epilepsy for the second time (having outgrown it once as a preschooler), we had several conversations about medical marijuana with her epileptologist. He was very positive about it, but seeing as it was not yet legal in our state, there was nothing to be done at the time but wait for the day when it might become legal.
In the meantime, after nearly two years of very effectively managing Awesome's little seizures with diet, trigger avoidance, and supplements--and treating her infrequent big seizures with rescue drugs as needed--Awesome's situation changed. Though in summer and fall 2015, through our careful efforts, Awesome's little seizure count decreased to an average of 3 a day--with lots of seizure free days--during the same time her big seizures began to increase in frequency. They doubled from an average of one big seizure every six weeks to one every three weeks. And then in October they increased to one every 5 days.
Clearly the time to abandon the non anti-epileptic drug (AED) approach to treating seizures was past. There was no responsible choice but to finally start anti-epileptic drugs (AED's).
The first month of AED treatment was a nightmare; Aweseome rapidly failed four trials of three AED's. And she didn't just fail them. She REALLY failed them. In unusual and extreme ways. By the time we saw her epileptologist in early December, he told us that Awesome could easily be his poster child for what can go wrong with AED's.
Awesome had more big seizures in the first 12 weeks on AED's than she'd had in the previous 12 months. The effect AED's have had on her little seizures has been even worse. In fact, her little seizure count seems dose dependent--the higher the dose of her current AED, the higher her little seizure count. Awesome's gone from an average of 3 little seizures a day before AED's to a daily average 10 times that amount--and soaring to as many as 50 on a bad day--while on AED's. And all this despite the fact that Awesome is still on the special diet that had been so effective before she started AED's. We believe her diet, in fact, is still helping. If Awesome ate like a normal American child I'm convinced that her seizure count would be approaching or even exceeding 100 a day. That, after all, was her grandfather's typical seizure count throughout his teen years--while he too was on AED's.
In December her epileptologist changed Awesome's diagnosis from epilepsy to intractable (drug-resistant) epilepsy. Because of the way she'd failed one of her AED's, Awesome's chances of developing serious health- and even life-threatening issues with many AED's increased dramatically. This unfortunate situation has led both to fewer AED treatment options, and also to having to prioritize seizure treatment goals. Controlling Awesome's more dangerous big seizures (which are status epilepticus--seizures that don't end without rescue medication) with a safe medication (less likely to cause a serious immune reaction) has become first priority; meanwhile we've stopped worrying about trying to control her little seizures (except through her special diet and trigger avoidance). Awesome's little seizures are apparently unusual (her doctor's variously described them as dialeptic seizures, atypically atypical absence, and frontal lobe pseudo-absence) and likely to continue to be drug resistant.
And so, in spring 2016, we found ourselves--after all the drama of AED trials--in a bit of an AED holding pattern: keeping things simple, and remaining on a low side-effect profile drug (that still gives Awesome serious GI issues). The idea is both to give Awesome a much needed break from AED trials, and to give her epileptologist time to regroup and consider what might be next. And startlingly, among the things her doctor put on the table--for as early as this fall or early next year--was a pre-surgery work-up for epilepsy brain surgery.
During the same time period that Awesome had been going through all those AED trials, I started to join online parental support groups for pediatric medical cannabis. And it was there that I began reading of individual families' experiences with medical marijuana in treating epilepsy.
A friend suggested that I connect with American for Safe Access and attend one of their online informational meetings. These meetings were how-to sessions for medical marijuana legalization efforts at the state level. Watching and listening to everyday sort of people who had been working on medical marijuana legalization efforts--many, very successfully--in various states across the US was both informative and humbling. I wish I could say that after attending one of these online meetings that I had started working hard to get our state CBD law in place, but I didn't. The truth is that my life was simply too overwhelming at the time. We were barely limping along, working very hard just to attempt to meet (and often failing in those efforts) life's minimum daily requirements. When you're in survival mode there's no time for that which doesn't absolutely need to be done.
Several months before CBD became legal in our state, I also signed up for an excellent, very informative Orientation to Medical Cannabis Class through Realm of Caring. This class made the how-to's we'd be dealing with if medical marijuana ever became legal in our state much more concrete. I learned about Realm of Caring's amazing online cannabis research library and their other resources--like the CBD dose calculator--and the chart showing how CBD tends to affect the metabolism of particular AED's (and thus change AED blood levels).
Soon after, like a dream come true, medical marijuana legislation was introduced in our state. We watched the drama unfold until finally the legislation was passed and then signed into law.
After that we had just about a month before it would be legal for us to start Awesome on CBD.
Thankfully, Awesome was due for an appointment with her neurologist just a week after the CBD legislation was signed by our governor. Awesome's doctor quickly agreed that it was a good idea to have Awesome start a trial of CBD oil. He said that all other treatment options should be put on hold for at least six months so that we could give medical marijuana a fair chance. We were not to make any changes in AED doses or in supplements--either by adding or subtracting or changing doses in the next six months. That way we'd be able to tell what CBD itself was doing and not be confusing the situation by making other changes. Baseline AED blood levels were drawn in the hospital lab right after our neurology appointment so we could track what CBD was doing to her AED blood levels.
Over the next weeks we--my husband, I, and family members--made lists of practical questions about the how-to's of using CBD. I called Realm of Caring and also CW Botanicals--since we had decided on Charlotte's Web as a first CBD oil to try--to get some of those practical questions answered. We chose Charlotte's Web both because we wanted to start with one of the major trusted brands of CBD, and also because we wanted to use a low THC product. There was no good reason to use a higher percentage of THC than was needed.
Awesome needs CBD oil in a medium other than coconut oil--which is a medium chain trigylceride--(MCT) and usually very helpful for those with seizures--because we've discovered that she has major issues with MCT's--they dramatically increase her little seizure frequency and also increase the length and severity of her big seizures. Realm of Caring was amazing in the way that the patient care specialists helpfully answered all our questions.
During the same time period, I also contacted a fellow listmate--a friend who runs a medical cannabis support group for parents in San Diego and who also maintains a blog on the subject of pediatric medical cannabis--to ask for any pointers she had. She kindly referred me to a page she'd written called Safely Starting Your Child on Medical Marijuana and, via private messaging and phone, answered my questions.
Next I ordered 1 milliliter oral syringes from a medical supply according to the recommendations of Realm of Caring's staff person. This saved me hours of sorting through options on Amazon...and I knew from the experience of other parents that the syringes worked well for my purposes.
Finally it was time to order the CBD oil itself. Once it arrived I located the requisite independent third party lab analysis reports (on CW Botanical's site--where they're listed by each CBD batch number) that our state law requires and printed out a copy.
The night before the day Awesome was to start CBD oil, I sat down with a very strong pair of reading glasses--the lines on the syringe are tiny and I had to run out to the pharmacy and buy the strongest reading glasses they sell--and struggled to figure out how draw out accurate doses of CBD oil. It took several syringes to finally get the hang of it and to perfect my still imperfect technique.On the weekend before that, my step mom and I had worked out a system for keeping track of CBD doses given and yet to give. It was a series of 7 snack sized baggies, each labeled with the name of the day of the week. Each labeled baggie holds that 3 oral syringes--that day's CBD doses. This allows us to tell at a glance how many doses have been given and have many are left to be given that day. The school of hard knocks has already taught us that when there's more than one adult in the house dispensing medication, it's important to have a fail-safe system for knowing whether a dose of medication has or has NOT been given. Duplicating a dose is bad; missing a dose even worse. And it's torture trying to figure out what to do--risk double dosing or risk missing a dose.
The baggies are kept in a plastic take-out container with a lid (labeled CBD); that container is kept in the
We have a second plastic take out container--without a lid--into which the empty day baggies go as soon as empty, so as to be used again. After each dose administration, I immediately take apart and wash the newly empty syringe with a tiny, skinny little brush (designed for cleaning metal drinking straws). The clean, wet syringe parts air dry in a small open container kept on the counter. I reconstruct them again only when its time to refill them with CBD for the next week. This is our system for staying organized.
The night before the first dose of CBD, we also worked out a finalized (there were many previous attempts to work it out) preliminary medication schedule. This was no small feat as each drug and supplement has its own constraints, required spacing from particular other drugs and supplements, etc. I posted the schedule on the side of the refrigerator.
We were finally ready to start CBD!
Comments
Post a Comment