Shortly before Calvin’s birth, sometime around the wretched, nightmarish 33rd week of my pregnancy, the neonatologists who helped decide when to take him—by scheduled c-section—told me and Michael that only five percent of babies born at 35 weeks need help breathing. We were encouraged. But shortly after Calvin was born he required surfactant for his lungs to properly inflate before being put on a respirator for sixteen hours during the first day of his life, and then on a CPAP (continuous positive airway pressure) for several more days. Since then, we have called Calvin our five-percent boy.
It has seemed that any time we learn there is a rare chance of succumbing to some affliction, Calvin does. Besides a host of neurological deficits, including being legally blind times five and suffering intractable epilepsy since the age of two, Calvin has never learned to talk, he’s had double ear infections, pneumonia, bronchitis, reflux, slow gastric emptying, urinary tract infections, roseola, two kinds of hernias, a broken tooth, scoliosis and a laundry list of side effects from anticonvulsant drugs—including dangerously high liver functions—which, at high doses, still don’t seem to stem his seizures. I imagine that many of these afflictions are suffered by more than five percent of the population, but as we’ve raised Calvin it sometimes feels like we just can’t catch a break. If it's not one thing, it's another. I keep hoping that the five-percent theory will work in his favor for once, perhaps with cannabis.
The other day we switched Calvin from a very dilute CBD (cannabidiol) cannabis oil to a slightly stronger one made by our local dispensary, augmenting the homemade THCA oil I’ve been giving him since last February, which has gradually helped him cut his benzodiazepine dose in half. Though stronger, this CBD oil has a mere four mgs of CBD in one milliliter of oil. To compare, Charlotte’s Web, the CBD oil many seizure-racked children in Colorado and California are benefiting from, ranges from 50 to 200 mgs per milliliter. Another way of looking at it is dosing. We started Calvin on 0.1 mg of CBD per kilogram of his weight, or slightly over 2 mg of CBD per day. One child I know of who is Calvin's size is taking 5.5 mgs of Charlotte’s Web per kilogram of her weight, or 125 mgs CBD per day—nearly sixty times the amount that Calvin is starting on! Luckily, she was gradually able to come off of all of her pharmaceuticals, though not without hardship.
You can see we are starting very, very cautiously, at the lowest effective dose that our beloved Dr. Dustin Sulak has seen. This “less is more” theory has been backed by the creator of the THCA oil recipe I’ve been giving Calvin, and it makes a lot of sense to me. Whether we’ll actually see results at very low doses is another thing because Calvin, unlike a lot of other children (probably 95 percent of them) seems to require unusually high doses of medications to get any palpable results.
One advantage I see in starting low is the reduced chance of any serious side effects from CBD’s interaction with Calvin’s other anticonvulsant drugs. The other advantage is finding a sweet spot of seizure control without using excessive amounts of cannabis which, in turn, equates to excessive amounts of cash since it isn’t covered by insurance. I suppose the converse would be to hit Calvin with a huge dose of CBD hoping to knock the seizures out, and then scale back on the dose if possible. If Calvin weren’t taking two other anticonvulsants I might consider that strategy, but the sorry truth is that he is, so we are stuck in the slow lane.
So, I am crossing my fingers hoping that, if there is even a mere five-percent chance that this low dose of high CBD oil can reduce or even stop Calvin's seizures, it will. Luckily, we've got plenty of room to move up.
It has seemed that any time we learn there is a rare chance of succumbing to some affliction, Calvin does. Besides a host of neurological deficits, including being legally blind times five and suffering intractable epilepsy since the age of two, Calvin has never learned to talk, he’s had double ear infections, pneumonia, bronchitis, reflux, slow gastric emptying, urinary tract infections, roseola, two kinds of hernias, a broken tooth, scoliosis and a laundry list of side effects from anticonvulsant drugs—including dangerously high liver functions—which, at high doses, still don’t seem to stem his seizures. I imagine that many of these afflictions are suffered by more than five percent of the population, but as we’ve raised Calvin it sometimes feels like we just can’t catch a break. If it's not one thing, it's another. I keep hoping that the five-percent theory will work in his favor for once, perhaps with cannabis.
The other day we switched Calvin from a very dilute CBD (cannabidiol) cannabis oil to a slightly stronger one made by our local dispensary, augmenting the homemade THCA oil I’ve been giving him since last February, which has gradually helped him cut his benzodiazepine dose in half. Though stronger, this CBD oil has a mere four mgs of CBD in one milliliter of oil. To compare, Charlotte’s Web, the CBD oil many seizure-racked children in Colorado and California are benefiting from, ranges from 50 to 200 mgs per milliliter. Another way of looking at it is dosing. We started Calvin on 0.1 mg of CBD per kilogram of his weight, or slightly over 2 mg of CBD per day. One child I know of who is Calvin's size is taking 5.5 mgs of Charlotte’s Web per kilogram of her weight, or 125 mgs CBD per day—nearly sixty times the amount that Calvin is starting on! Luckily, she was gradually able to come off of all of her pharmaceuticals, though not without hardship.
You can see we are starting very, very cautiously, at the lowest effective dose that our beloved Dr. Dustin Sulak has seen. This “less is more” theory has been backed by the creator of the THCA oil recipe I’ve been giving Calvin, and it makes a lot of sense to me. Whether we’ll actually see results at very low doses is another thing because Calvin, unlike a lot of other children (probably 95 percent of them) seems to require unusually high doses of medications to get any palpable results.
One advantage I see in starting low is the reduced chance of any serious side effects from CBD’s interaction with Calvin’s other anticonvulsant drugs. The other advantage is finding a sweet spot of seizure control without using excessive amounts of cannabis which, in turn, equates to excessive amounts of cash since it isn’t covered by insurance. I suppose the converse would be to hit Calvin with a huge dose of CBD hoping to knock the seizures out, and then scale back on the dose if possible. If Calvin weren’t taking two other anticonvulsants I might consider that strategy, but the sorry truth is that he is, so we are stuck in the slow lane.
So, I am crossing my fingers hoping that, if there is even a mere five-percent chance that this low dose of high CBD oil can reduce or even stop Calvin's seizures, it will. Luckily, we've got plenty of room to move up.
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| jar of high cbd cannabis oil |
I'm finding the dosing stuff frustrating, to tell you the truth. We're only at 1.875 mg/lb of the new Charlotte's Web Hemp oil -- we had backed down from about 2.5 mg/lb a few months ago in an attempt to regain some seizure control. I read that shaking things up, lowering the dose, etc. had helped some of the kids. I can't say, yet, whether that helped Sophie -- and it's still too early to know whether the hemp oil is doing the trip. I'm reluctant to try the THCa -- I don't really have a reason not to, except that we did try it earlier in the summer, and she had a strange reaction to it. I don't think Sophie is one of the kids who does well or better on THC itself, but I'm still not sure.
ReplyDeleteBeen following your blog for awhile now. Thank you so much for sharing your story. My daughter is at a crazy low amount of cannabis oil. One very diluted drop a day kind of stuff. She saw an 80% reduction once we found the right strain but after a week has relapsed. We are trying to get back to control. I definitely agree that a small amount is better.
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