Where to begin? I guess by first saying that, since I decreased Calvin's Palmetto Harmony CBD oil from 145 milligrams per day down to 60 mgs nearly three weeks ago, (because I thought it might be triggering a particularly bad spate of seizures), he has had just one complex partial and two grand mal seizures. Furthermore, it has been eleven days since his last grand mal which, relatively speaking, is on the longer side of recent things. So, April is shaping up to be a decent month seizure-wise (again, relatively speaking), especially compared to the madness in March.
I use the phrase "relatively speaking" because when I dug out old calendars I was reminded that six years ago Calvin suffered just thirteen grand mal seizures the entire year in comparison to each of the last five years in which he had fifty or more. But I must also remember that in 2013 he was on high doses of three powerful antiepileptic drugs. I must remember that I cried nearly every day having to peel my psychotic child off of the ceiling regularly. My husband and I agreed that no amount of seizure freedom seemed worth that, really. Calvin's and our quality of life was in ruins, and so we began weaning his meds, which had heinous side effects despite rarely giving Calvin more than a few weeks at a time of seizure freedom. Then, in 2014, we began giving him a homemade THCA oil, which virtually eliminated Calvin's daytime grand mal seizures.
Last Thursday, we took Calvin to see Laurel Sheppard, the nurse practitioner in Dr. Dustin Sulak's Maine office. Dr. Sulak specializes in treating various conditions using cannabis; Laurel feilds the epilepsy cases. The appointment, though long overdue, was worthwhile, if only to serve as a validation of the knowledge I've gleaned by doing my own research. Laurel confirmed my understanding that the dosing range for CBD is vast, from as low as 0.5 mgs/kg of weight up to 30 mgs/kg. I learned that the range for THCA is wider than I'd previously thought. She said that many children are doing well taking both CBD and THCA oils, which doesn't surprise me. Others are doing well adding a little bit of THC. She recommended that our next step with Calvin, after seeing how the recent CBD reduction goes, might be to increase my homemade THCA oil, which I had reduced last fall, replacing the morning dose with CBD, and eliminating the late-afternoon dose all together to see if some of his late-afternoon agitation improved.
Laurel's suggestion seemed like a reasonable one, but I was thrown another curveball: the cannabis flower I use to make Calvin's THCA oil, Chemdog—one which I've been getting reliably for the past five-and-a-half years from our local dispensary—isn't available, at least not right now. Moreover, I'm running low on the oil. So, I spent all day yesterday and a good part of both weekend days trying to solve this dilemma. I contacted a bunch of my buddies in the pediatric epilepsy cannabis world. All of them did their best to help. Suffice to say I found no local caregivers who are growing the strain, nor did I find a consistent, concentrated and compatible THCA oil that I could use as a substitute.
Thanks to an amazing, thoughtful, generous woman at the dispensary, named Danielle, I found a solution I think I can live with, and I am actually kind of amazed that I'm not freaking out: I'm going to try using a different strain, one called Mandarin Cookies, to make my oil instead of good ole Chemdog. Mandarin Cookies is an indica-dominant phenotype said to be rich in linalool and mercene—terpenes thought to be helpful in suppressing seizures. Reviewers laud Mandarin Cookies for its potential to relax and uplift. I'm hoping it might be even better at controlling seizures than Chemdog was. If not, I may be able to go back to using Chemdog once the dispensary harvests it again.
Meanwhile, Calvin's seizure activity has calmed down these past two-and-a-half weeks, but his behavior has seemed to go downhill. He's been more agitated, loud, more restless, and seemingly more headachy. Calvin's behavior has caused me to rethink his Keppra dose, which was already very high before I increased it early last month to account for his recent weight gain and a bad spate of seizures. I fear I may have acted too hastily in increasing it.
So, I sat down at my computer to reacquaint myself with the drug. I was reminded that Keppra's therapeutic range for kids Calvin's age is between 40 and 60 mgs/kg; Calvin is taking 75 mgs/kg. I read that Keppra does not appear to yield much benefit over a certain dose. I am often reminded that most drug side effects are dose related, and that any antiepileptic drug, especially at high doses—including cannabis—can also trigger seizures in some people.
As I sit and listen to Calvin cough and shriek, watch him crook his arms and madly rub his fingertips together, see him clench his jaw, poke his eye, rub his forehead, hear him bang his head against his bed's side panel five or six times a night, I realize his behavior has worsened since increasing the Keppra. So I got his neurologist's buy-in (not that I need to) on reducing his dose in the coming weeks. I'd do it now, but I want a slightly larger window to determine if having cut Calvin's CBD yields meaningful and longer-term results, and I have to decide whether to initiate the new Mandarin Cookies THCA oil first.
And so you see why—between reducing Keppra, evaluating CBD and switching THCA strains—I did not know where to begin when starting this. Having laid it all out in words, perhaps I do now.
I use the phrase "relatively speaking" because when I dug out old calendars I was reminded that six years ago Calvin suffered just thirteen grand mal seizures the entire year in comparison to each of the last five years in which he had fifty or more. But I must also remember that in 2013 he was on high doses of three powerful antiepileptic drugs. I must remember that I cried nearly every day having to peel my psychotic child off of the ceiling regularly. My husband and I agreed that no amount of seizure freedom seemed worth that, really. Calvin's and our quality of life was in ruins, and so we began weaning his meds, which had heinous side effects despite rarely giving Calvin more than a few weeks at a time of seizure freedom. Then, in 2014, we began giving him a homemade THCA oil, which virtually eliminated Calvin's daytime grand mal seizures.
Last Thursday, we took Calvin to see Laurel Sheppard, the nurse practitioner in Dr. Dustin Sulak's Maine office. Dr. Sulak specializes in treating various conditions using cannabis; Laurel feilds the epilepsy cases. The appointment, though long overdue, was worthwhile, if only to serve as a validation of the knowledge I've gleaned by doing my own research. Laurel confirmed my understanding that the dosing range for CBD is vast, from as low as 0.5 mgs/kg of weight up to 30 mgs/kg. I learned that the range for THCA is wider than I'd previously thought. She said that many children are doing well taking both CBD and THCA oils, which doesn't surprise me. Others are doing well adding a little bit of THC. She recommended that our next step with Calvin, after seeing how the recent CBD reduction goes, might be to increase my homemade THCA oil, which I had reduced last fall, replacing the morning dose with CBD, and eliminating the late-afternoon dose all together to see if some of his late-afternoon agitation improved.
Laurel's suggestion seemed like a reasonable one, but I was thrown another curveball: the cannabis flower I use to make Calvin's THCA oil, Chemdog—one which I've been getting reliably for the past five-and-a-half years from our local dispensary—isn't available, at least not right now. Moreover, I'm running low on the oil. So, I spent all day yesterday and a good part of both weekend days trying to solve this dilemma. I contacted a bunch of my buddies in the pediatric epilepsy cannabis world. All of them did their best to help. Suffice to say I found no local caregivers who are growing the strain, nor did I find a consistent, concentrated and compatible THCA oil that I could use as a substitute.
Thanks to an amazing, thoughtful, generous woman at the dispensary, named Danielle, I found a solution I think I can live with, and I am actually kind of amazed that I'm not freaking out: I'm going to try using a different strain, one called Mandarin Cookies, to make my oil instead of good ole Chemdog. Mandarin Cookies is an indica-dominant phenotype said to be rich in linalool and mercene—terpenes thought to be helpful in suppressing seizures. Reviewers laud Mandarin Cookies for its potential to relax and uplift. I'm hoping it might be even better at controlling seizures than Chemdog was. If not, I may be able to go back to using Chemdog once the dispensary harvests it again.
Meanwhile, Calvin's seizure activity has calmed down these past two-and-a-half weeks, but his behavior has seemed to go downhill. He's been more agitated, loud, more restless, and seemingly more headachy. Calvin's behavior has caused me to rethink his Keppra dose, which was already very high before I increased it early last month to account for his recent weight gain and a bad spate of seizures. I fear I may have acted too hastily in increasing it.
So, I sat down at my computer to reacquaint myself with the drug. I was reminded that Keppra's therapeutic range for kids Calvin's age is between 40 and 60 mgs/kg; Calvin is taking 75 mgs/kg. I read that Keppra does not appear to yield much benefit over a certain dose. I am often reminded that most drug side effects are dose related, and that any antiepileptic drug, especially at high doses—including cannabis—can also trigger seizures in some people.
As I sit and listen to Calvin cough and shriek, watch him crook his arms and madly rub his fingertips together, see him clench his jaw, poke his eye, rub his forehead, hear him bang his head against his bed's side panel five or six times a night, I realize his behavior has worsened since increasing the Keppra. So I got his neurologist's buy-in (not that I need to) on reducing his dose in the coming weeks. I'd do it now, but I want a slightly larger window to determine if having cut Calvin's CBD yields meaningful and longer-term results, and I have to decide whether to initiate the new Mandarin Cookies THCA oil first.
And so you see why—between reducing Keppra, evaluating CBD and switching THCA strains—I did not know where to begin when starting this. Having laid it all out in words, perhaps I do now.
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| Making my THCA oil |
Hi Christy,
ReplyDeleteI just wanted to let you know that we are still out here reading, listening and empathizing with your incredible journey. Hang in there, you are admired, loved and heard.
Nice work. It is good to see you document your efforts in CBD world. Now, what CBD name strain do they have for stressed out parents!?
ReplyDelete