haleigh's hope for calvin

Last month, just prior to Calvin's six-day seizure spell, we all enjoyed his longest grand mal seizure-free stint in over a year: twenty-one days. I should clarify that I am counting days between grand mal seizures, since those are his most violent and obvious ones. His partial complex seizures, which began appearing again late last year in the wake of his grand mals, are often difficult to discern and sometimes I wonder if I am mistaking them for benzodiazepine withdrawal symptoms such as rapid heartbeat, hyperventilation, hallucinations and agitation.

A few things might have contributed to the somewhat long stretch between grand mals (over twice as long as of late): we paused Calvin's benzodiazepine wean for several weeks which might have given him a temporary reprieve; we increased his bedtime Keppra, partially to account for weight gain but also to see if it might reduce his number of seizures; I switched Calvin from my homemade CBD oil, which I'd run out of, to a new one called Haleigh's Hope. These last two moves I had to make almost simultaneously, which meant that I introduced two variables at the same time, something I am loath to do because additional variables makes it more difficult to ascertain what is at play when symptoms wax or wane. My gut tells me Calvin's longish stint was likely due to the increase in Keppra, mostly because we have seen notable improvement in the past when we have upped his dose. But suffice to say he doesn't seem to be suffering ills from using the new CBD oil and it could be helping.

The new oil, Haleigh's Hope, is a high CBD (cannabidiol) product from Colorado. I heard about it when a Facebook friend began using it to treat her child in New York State. Her daughter enjoyed several months of seizure freedom after her first dose of the oil. I contacted the maker to ask questions about the oil so that I could compare it with other products on the market. What I learned was that the oil has the same ratio of CBD to THC—20:1—as the CBD oil I've been making for Calvin. Initially, I thought Haleigh's Hope was made from the same cannabis strain as I'd been using, one called ACDC, but I must have confused it with another high CBD oil I'd been researching. Instead, Haleigh's Hope is made from a hybrid of Pre 98 Bubba Kush (high CBD Cannabis Cup winner), Cannatonic and R4. Another reason I chose Haleigh's Hope is that its makers employ a CO2 extraction method which captures all of the terpenes and cannabinoids without leaving trace constituents such as alcohol or chlorophyll. Moreover, one of the base oils they offer is unflavored organic MCT (medium chain triglyceride) coconut oil, which is nearly identical to the one I use that holds the cannabinoids in suspension requiring little to no shaking of the liquid, though I've made a habit of it anyway. The extra strength version of Haleigh's Hope, which is a beautiful amber color, has 40 mgs CBD/ml of oil—again, nearly identical to the strength I've been making for Calvin for over a year, which made dosing easy.

All of these properties informed my decision to choose Haleigh's Hope over other CBD oils on the market, and the transition has appeared seamless. Today is day eight since Calvin's last seizure, which isn't a record, but I'll take it and hope for more.

I've said before that it is yet unclear if CBD is helping to reduce or stay Calvin's seizures; he's still on a relatively low dose. My homemade THCA oil, however, seems to have made an impact; since starting it two years ago, Calvin's daytime tonic-clonic seizures have vanished—his last one was 300 days ago and he's had only one in 580 days. Prior to starting THCA he used to have daytime grand mals every week or two, often while taking a bath. The daytime dosing of THCA oil has consigned Calvin's grand mal seizures to the night when he is safe in bed, and though he still has three to five every month, that is no more than the number he averaged two years ago when he was taking ten times more benzodiazepine than he is today. What I do believe, though, is that the CBD isn't hurting Calvin and may even be helping to buffer his protracted benzodiazepine withdrawal. This is why I've decided to keep him on CBD, at least for the next year or so until Calvin is completely off of the clobazam.

Recently, I've been contacted by several mothers asking for guidance about benzodiazepine withdrawal, specifically clobazam, aka Onfi, and/or cannabis use. I advise them as best I can, because I can, and because so many wonderful folks spent hours of their precious time counseling me. What I usually tell them about Onfi withdrawal is to first switch from the pill to the liquid form and to go uber slow—decreasing only five to ten percent of the overall dose every two to four weeks or more, depending upon severity of withdrawal symptoms, and to read the Ashton manual. These are important facts that neurologists don't seem to know. What I tell folks curious about cannabis is that THCA can be as effective as CBD, the only caveat being that pre-made THCA oil is more difficult to get; most makers won't ship the oil out of state. So, though I'm a true THCA believer, I sometimes advise parents to try CBD first since it is fairly easy to get no matter where you live and, if it doesn't work, then I suggest trying non-psychoactive THCA or even bits of THC.

If you are interested in making THCA cannabis oil, it is easy as pie, and you can read about the process here.

And as far as Haleigh's Hope for Calvin, I've crossed my fingers and knocked on wood. So far, so good.