This past Monday was week six back on Haleigh’s Hope after a reboot, and week three on an increased dose. A little background on her cannabis treatment:
Aria had started Haleigh’s Hope on 12/12/15, she was having about five seizures daily at that time, a slight reduction compared to when she was on all four pharmas two weeks prior. About 10 days after starting HH, she began to have more seizures, clustering in the morning, afternoon, after going to sleep, and throughout the night. The rule of thumb is to wait three weeks before making dosage adjustments, but with the sudden increase in numbers and intensity of seizures, something had to be done. We thought maybe she was sensitive to CBD, as some patients are, and needed a lower dose than the standard starting dose for epilepsy, so we decreased from .5mg/lb to .25mg/lb. Her seizures still steadily increased. We tried changing her dosing from 3x a day to 4x a day for better coverage of the half-life; her seizures still steadily increased. At this point it was obvious that it wasn’t the CBD causing the issue.
CBD processes through the P450 liver enzyme, as do many medications, and in this case, Onfi, the one medication she was still on. CBD has been found to interact with these medications, causing levels to rise or fall, and most times exacerbating the side effects and seizure activity. We knew this going in, and had chosen Onfi as the last pharma she’d be on because it was the only one that she responded to in the past, and it didn’t seem safe to take her completely off medication in case the CBD didn’t work. So, I called her epileptologist for a blood work script, and went to the lab to have Onfi levels drawn. Going to the lab for blood draws with a toddler is a chore in itself; going with a toddler who has PTSD from 20-25 long term hospital stays in her short 2 years on this Earth, and hundreds of needle sticks and head wraps, is a whole nother ball game.
It took a week to get her Onfi levels. On January 16th, about a month after starting Haleigh’s Hope, I called the doctor on call to get the results. I didn’t care that it was a Saturday, I called her epileptologist’s office three times that Friday, morning, noon, and evening, with no results. I needed an answer to know whether or not I was going to start weaning her off of Onfi. I couldn’t keep watching her seize like that without being able to do anything. I had already consulted with the Family of Hope Support Group for HH patients, speaking with numerous parents & caregivers that have gone through the same thing; what their experience was, how withdrawal affected their loved ones, how they handled it, and advice on a doctor’s wean schedule vs coming off it slower than directed. The doctor on call first told me to call back on Monday, even though the results were in then. I refused and demanded to know the results, stressing that my daughter’s well being depended on it and I couldn’t wait another day. After a short argument as to why this doctor should give me the results as opposed to waiting until Monday, she finally gave in.
Aria’s Onfi levels had risen from 330 (her baseline after the dosage decrease and prior to HH), to a scary 629. The second the doctor read that number I knew it was time to start the wean that evening. Initially our plan was to get off a majority of pharmas, check. Start CBD oil, check. Give it about six months to observe results before weaning Onfi, ABORT! Based on advice and experience shared in the support group, I had my weaning plan in place; I had spoken to her doc previously about the possibility of weaning if her levels came back even remotely higher than her baseline, and all he had said was “we’ll see.” Without his approval that Saturday evening, I decreased Aria’s night time dose. She was taking 5mg 2x a day, so her evening dose went from 5mg to 3.75mg.
At this point in time, Aria was having close to 60 seizures a day again. After the first decrease that evening, Aria already began having less seizures. Monday morning I called her doctor’s office to see what he thought of the Onfi levels and my plan to decrease. Initially he didn’t agree. He didn’t believe that it was possible for the CBD to interact with drug levels in such a way (insert sarcastic remark here), and wanted to increase her Onfi dose to stop the seizures. In my mind, I was screaming,
“You’re an epileptologist, head of the EMU, part of the epidiolex study, her levels have doubled in four weeks with no other factor, and you’re telling me you don’t see the correlation between increased pharmaceutical levels shortly after starting CBD oil and a significant and steady increase in seizure activity?!”
I held my tongue, because there really would have been some curse words in there. I respect him as a doctor, he is great at what he does in his field, but he is not familiar with MMJ outside of what GW Pharmaceuticals produces as the “real thing.” We had already been working with him prior to her surgeries, and he took Aria on as a patient when her diagnosing neurologist refused to write us a script to get her baseline Onfi levels necessary to start CBD. So, instead of screaming my disbelief at him, I told him my observations over the past two days after decreasing Onfi, that she was already having less seizures. As soon as I said that his tone of voice changed, “oh, well if you’re seeing positive changes, then let’s see where this goes.” He was going to give me a wean schedule, dropping one milliliter, or 2.5mg, a week. I told him I was going to stick to my plan of going down 1.25mg (.5ml), every two weeks, to give her body time to adjust and reduce withdrawal effects. He gave his approval and told me to check in if anything goes wrong. I must say, his continued confidence in me and my knowledge of Aria’s condition and treatment options has really helped me continue to pursue alternative treatments. I love bragging about the follow up appointment in April, when he jokingly asked me to come work for him because I was so well informed, and completely on top of Aria’s treatment, and I remember his words, “you’re making my job easy.” It feels pretty good when a professional is impressed with all you do for your kiddo! Anyway, back to the wean:
Aria handled the wean very well, and with every decrease we continued to see improvement both developmentally and in seizure activity. Just 42 days into the wean (three decreases of Onfi), and her levels dropping from 629 to 360, Aria went from an average of 51 seizures a day, down to an average of 27 seizures a day. The results were truly amazing! As she got down to 5mg/day of Onfi, and up to .75mg/lb of CBD, Aria was down to 1-3 seizures over night with the occasional seizure free night. This seizure control held steady until after the Onfi wean. On May 5th, Aria took her very last dose of Onfi, and became pharma-free. We had worked our way up to 1.5mg/lb of CBD during the wean, combating withdrawal seizure clusters after each decrease as her Onfi levels dropped below average. Close to a month after the wean, Aria’s seizures suddenly increased, from 1-3 overnight, up to about 5 or 6 with a morning cluster variable. We tried increasing the oil, decreasing the oil, 15:1 ratio as opposed to the 20:1 we were using, but no change in seizure control.
Feeling the panic come on, thinking, “Oh my gosh, we’ve reached the end of the line, we’re going to have to move in order to get access to THC or different ratios, how the hell are we going to manage doing that?!” I reached out to the Family of Hope Support group once again, to see what our options were, and if there was anything I hadn’t tried. Sure enough, Jason Cranford and his wife Heather (makers of HH), came to the rescue. We have cannabinoid receptors in our brain, and sometimes what happens over time, is the receptors become clogged with CBD, thus decreasing, or even eliminating, its effectiveness. There’s an “easy” solution to this, called a reboot; going without the oil for 2-7 days in order to unclog the receptors, and restarting at a low dose. Jason and Heather suggested that since Aria was now free of all pharmas, and considering her continued positive results to the oil up to that point, that doing a reboot and returning the 20:1 should help improve seizure control. So basically starting over from scratch, but this time there’d be nothing inhibiting or interacting with the CBD; a clean slate.
I was extremely nervous to do the reboot, afraid that her seizures would quickly rise in numbers, and that for her own safety, we wouldn’t be able to do a reboot for more than a couple days. I feared that wasn’t going to be long enough to unclog her receptors. We planned to have her go without the oil for just two days before restarting at .25mg/lb. If her seizures didn’t increase terribly, we agreed that we would let the reboot go a day at a time, to clear her receptors and get as much of a fresh start as possible. Much to my surprise, Aria’s seizures didn’t increase one bit, and we were able to complete a 7 day reboot. On July 4th, she restarted the oil on the sensitive dose. After three weeks, there was still no change in seizure control, but she still progressed developmentally, shocking us with an increased vocabulary (she has a solid 25 words now), gross and fine motor skills, and cognitive thinking. So we increased the oil to .5mg/lb in an attempt to bring the seizures back down. For the first two and a half weeks, there was still no change in seizure control, and just as I started to become skeptical again, we started to see a slight decrease in seizure activity.
Back to present day:
With a slight decrease in seizures as we approached week three (this past Monday), I decided to let her go a bit longer before making an increase, to see if seizure control improved anymore. As I stated before, it’s recommended to wait approximately three weeks before making dosing changes, because it takes about two weeks for it to become fully effective, and then the third week to observe whether it’s effective enough. Tomorrow will be week four on .5mg/lb, but I’m still not going to increase just yet. She was having an average of 6 prior to the increase, now having an average of 5. Her seizures are all over night, generally between 9pm and 7am, 6-7am being the waking hour, and getting CBD four times a day. The amount of doses can make a difference in effectiveness, some people find success with 3x, 4x, 5x, or 6x a day. We initially started at 3x a day, but felt Aria needed better coverage, as the half-life of CBD is about 4 hours; in the past with pharmaceuticals, Aria has always been sensitive to half-lives, so we went to 4x a day back during the Onfi wean.
With that said, Friday night we switched Aria’s dosing schedule to 5x a day to try and give her better coverage overnight, during those more susceptible hours when her seizure threshold appears to be lowered. Previously at 4x a day, she got .17ml at 5am, 11am, 5pm, & 11pm. Now at 5x a day for more overnight coverage, she’ll get .14ml at 5am, 11am, 5pm, 9pm, & 1am, so that she receives a dose shortly before the times of night she has seizures, and before waking. We’ll observe the effectiveness of this schedule over the next week or two before making an increase again.
In the meantime, Aria is doing so well developmentally, as I said she has a solid 25 individual words now, and is continuing to show interest in learning new words, expanding play schemes and following directions. Her therapists are very impressed with her progress since we made the switch to CBD, that they feel she’s ready to start introducing preschool skills! We’re working on the concept of two, and counting to five, which she thoroughly enjoys, and working on saying “three” when asked her age for her birthday coming up in October. I made tags for our shoe cubbies, so she can start to recognize her written name and starting to practice saying her name (something I probably should have worked on before but just never did). Daily routines are getting easier with her, she cooperates when it’s time to brush our teeth and wash our hands, and regaining interest in the potty. I am so proud of Aria, despite everything she has been through, she has always continued to smile. Now she’s showing an interest in learning more than ever before, and I am so excited to take this journey with her and be her guide.
We’ve said it so many times, we are so grateful for all the people at the Flowering Hope Foundation and Haleigh’s Hope that have made it possible for our little girl, and many many other people, to find hope and a better life without harmful pharmaceuticals. Thank you all!