My anxiety is running rampant right now, I’m trying not to lose my mind over this. Aria had a seizure cluster this morning, just five, (ha, just five, as if any number of seizures is okay), each roughly five minutes apart, and an average of 30 seconds each. I gave her a rescue dose during the third one, and then when she had the fifth I gave her another rescue dose and it stopped. She’s been quite miserable this morning, though I must say on a scale of 1 to 10 (10 being unbearably miserable), before CBD, mornings like this were very easily rated between an 8 and a 10, and usually the clusters were more intense and higher in numbers. After CBD, mornings like this became no more than a 5, and this morning specifically, I give it a 3. This time last year, I couldn’t even imagine putting her in daycare, let alone preschool, with as intense as the clusters were, especially in the mornings. She would cluster for the first hour or two after waking up, then she’d nap in the afternoon and have another small cluster. It’d leave her tired and grumpy, and not much attention or patience for activities; not to mention the side effects from the medications that didn’t seem to be doing much of anything. “She’ll most likely be worse without the medications,” or, “It’s too risky to decrease one of the medications because it may be working with another one to suppress seizures.” Those were the most common responses I got when suggesting to back off of the medications. I’m definitely continuing to see the benefits of switching from pharmaceuticals to solely whole plant CBD. Now preschool is a real possibility, it’s just navigating the waters of accommodations and resources (I am open to receiving advice on this! haha).
Even with that, what has my anxiety going is whether or not we’re going to achieve better seizure control with just the 20:1. She has clearly made tremendous progress, but the seizure control still needs to be improved, and it’s so hard not to be impatient with this whole process.
We just did the reboot, I waited extra long to make an increase just to see if seizures leveled out anymore. This past Friday I changed up her dosing from 4x a day to 5x a day, in order to give her better coverage overnight to see if that may help. Initially there was no change, and then it seemed it may have helped a bit, dropping down to about 2-3 seizures and sleeping rather well. That lasted for a couple days and then she returned to the “norm,” which has been an average of 5-6 seizures. Now I’m thinking I shouldn’t have waited so long to do an increase, and that that’s really what’s needed. So today I increased her afternoon dose from .5mg/lb to .75mg/lb. I’m not going to change from the 5x a day, because I really do think the better overnight coverage could help; getting it at 5pm, 9pm, 1am, 5am, and once during the day at 11am. One thing’s for sure, her mood has turned around after she took that increased afternoon dose. It could have just been a coincidence, but shortly after she became much more cheerful, and was even cooperative enough to help me make the ever-so-involved coconut pancakes for dinner (yes, sometimes we have breakfast for dinner!).
However, all I keep thinking is that this time around it’s just not going to be enough. We’re going to have to break apart our family, strain our finances even more, and move to another state to get better access to medical marijuana, mainly to try a different ratio or adding THC. Nothing is going to be available in PA until after 2018, and we just can’t wait on the government to drag their feet. What we can legally order online and have delivered, is very limited. Don’t get me wrong, as I’ve expressed before, we are so very grateful for all that the Flowering Hope Foundation does with Haleigh’s Hope, and that we have access to such a high quality product!
Just one step at a time, and right now it’s time to just observe over the next 2-3 weeks.
Shut up anxiety! “No.”
Of course my anxiety takes me to the worst case scenario first, but before that, we do still have some moves we can make, without actually moving. She just increased today to .75mg/lb. The recommended max dose is 3mg/lb, though after a certain amount of time it’s recommended to try adding a different cannabinoid to help, or a different ratio or strain instead of maxing out (dosing marijuana is very different from dosing pharmaceuticals, where doctors take it to the max, or further, despite the horrid side effects and tolls on the body). My thinking is that after the next 2-3 weeks, we’ll try increasing again if necessary, bringing her to 1mg/lb, and then another 2-3 weeks of observation. That puts us into the first week of October. If adequate seizure control isn’t seen at that point, we may consider trying the 15:1 ratio, which has a little more THC per milliliter. With the 15:1, we would still have the room to make dose increases if necessary (sometimes people find they need to decrease on the 15:1 because it has more THC). If that then also proves to not bring adequate seizure control, we would then consider adding THC to the regimen. I just don’t know exactly how long we would give it before saying “okay, just CBD isn’t enough.” Do we increase the 20:1 to 1.75mg/lb (in a timely manor of course), where she was at prior to the reboot, to see if seizure control can be improved; or do we switch to 15:1 after the next increase and no improvement is seen; and after switching to 15:1, how many increases/decreases do we do before considering to add THC? So right now I’ve put the question into the Family of Hope Support Group, which direction we should take, so we’ll see what they suggest at this point.
So on edge and impatient as f***!!
Just breathe. Just breathe.
On a less stressful note, Aria had her psychological evaluation yesterday afternoon for the Intermediate Unit transition coming up in October. They included a psych eval because of everything she’s been through (multiple pharmas and surgery), and the concern with her communication in social settings. The meeting actually went extremely well, the psychologist was very impressed with how well she is doing despite everything she’s gone through, and how much of a positive impact whole plant CBD has had on her all around. On monday we go to the IU for her full developmental evaluation and to discuss, or at least touch base, preschool options and accommodations. All the services she currently gets through Early Intervention will carry over, so no worries there. I am interested in their viewpoint on moving forward in her therapy, and preschool options, so we’ll see how that goes and what they say!
Until then, best wishes to all our readers, and don’t forget to visit our contact page to submit your story (or a link to your blog) about living with epilepsy as a patient, caregiver, or loved one.
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Toodles!
teamariablog 
This must be difficult day in and day out not to be able to overcome the challenge of controlling Aria’s seizures. You are and certainly have done a wonderful job in staying on top of Aria’s seizures. You have been in inspiration to all of us. “Just breathe” and take a moment to see how far you all have come in this battle. How exciting that Aria will have an opportunity to attend preschool soon. Early intervention offers great classrooms that provide a safe environment and teachers that are familiar with children battling seizures. Keep up the great work you have been doing and Aria is so fortunate to have you advocating for her in her journey!
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