Our young adult sons have been arriving home from far and wide since Tuesday. Today--the day before Thanksgiving--our house was noisy and full. Every bed in the house will be occupied tonight and starting tomorrow, we'll start having to utilize couches as well.
While we'd started shopping for the Thanksgiving meal on Monday, it wasn't until today--Wednesday--that we started cooking. Most of the Awesome's five older, young-adult brothers pitched in to help. Because that's how we do things in our family. And so our large kitchen was a noisy, busy place this afternoon and evening, with everyone working to cook something. Our accomplishments for the day were salad dressing, candied pecans, mashed sweet potatoes, corn bread dressing, and mini pies--apple, rhubarb, and pumpkin. There was music, coffee, wrestling, debate (because there is always debate when our family gets together--it's a family sport), snacks, a pot of soup on the stove to sustain us, lots of laughter, and always chaos. There were also an extra dog--a puppy named Oatmeal--and two cats--who'd just been spayed and looked somewhat shell-shocked as they slept in a hammock in our large kitty crate--in the mix.
And Awesome, our 13 year old daughter with intractable epilepsy, was in the midst of it all. Participating. She was the instigator of the wrestling contest. She and our 3 year old granddaughter Skye played pretend, drew pictures together, or hung out together most of the afternoon and evening, showing up in the kitchen at some point, dressed in costumes, toting Nerf guns and not afraid to use them, laughing, giggling, and ambushing unsuspecting brothers/uncles. And near the end of the evening when we decided that we all deserved a reward of a warm mini pie, Awesome--with Skye's assistance--made whipped cream using heavy whipping cream. It was Awesome's own contribution to Thanksgiving. And it was all good.
In one of the breathing spaces of the evening, my husband David and I caught up with each other and noted together how different this Thanksgiving has been so far, from the Thanksgivings of the last two years. A day like today is the gift that CBD has given us.
I'm not saying that Awesome is seizure free--or even anything close to it. In fact, her little seizure counts lately have been higher than usual as she adjusts to yet another CBD trial, this time of 10:1 Haleigh's Hope. Awesome's brain, it seems, is still struggling to adjust to the change.
But CBD has given us the return of our daughter Awesome--in being able to be herself once again. CBD has made an astounding difference in what Awesome is like from minute to minute, from hour to hour. All day. Everyday. The inter-ictal--between seizures--Awesome really is 95% herself again. She is no longer struggling and overwhelmed by all the symptoms that went with pharmaceutical antiepileptic drugs (AED's) and/or with epilepsy itself. The fatigue. The lack of stamina. The lack of resilience. The tendency to become easily overwhelmed. The desire to seek out solitude, darkness, and quiet, to close the door, and to shut out the world because it was all too overwhelming for her to deal with. Let alone participate in. There was also the guilt she struggled with because--and she knew this wasn't right--she just couldn't wait for everyone to leave again because dealing with the activity, the noise, and chaos was beyond her. And there was the sadness that she felt in not being able participate in any but the smallest bit of it all because, again, she seriously just could not handle it all. Despite wanting to be able to do so.
And there was for us as parents, a similar feeling of sadness because we could see that our daughter Awesome was no longer living life as Awesome--the social, outgoing, life-of-the-party person she was and had always been--but was instead simply existing--self-sequestered in a dark room, tearful, sad, and desperate for the house to be quiet again. As parents it was sad to watch this happen. Sad to see Awesome shut out of the joy and the fun. Shut out of everything she loves.
That Awesome is once again back to her outgoing, lively, and joyful self. An Awesome who is once again smack dab in the middle of whatever is happening and even more so, an Aweomse who is herself making things happen. Making things happen so much that we've had to actually tell her--as we used to--to tone it down.
This is nothing short of a miracle. It is the miracle that CBD has given us. It started to happen about 5 to 6 months ago, sometime in June about a month after we transitioned to from Haleigh's Hope 20:1 to Haleigh's Hope 15:1. Gradually, the tired, sad, overwhelmed, constantly fatigued Awesome began to fade and the old pre-epilepsy Awesome began to return. Slowly. But steadily. And that happier, more resilient, more energetic, more social Awesome has continued to remain with us all through these last few months. Despite seizure set-backs. Despite lots of epilepsy and non-epilepsy related stress in our lives.
*******************We're now 18 months into our trial of medical cannabis in the form of CBD--which we started on June 1, 2016.
Charlotte's Web (CW) gave us--aside from a whole lot of troublesome drug interactions with Awesome's AED's--the most amazing thing: big seizures that ended on their own--without rescue drugs--for the very first time. But not consistently so. On occasion we still needed to use the seizure rescue med Diastat to stop status seizures. CW also cut the time Diastat took to work from 10 minutes down to 1-3 minutes. But because things weren't consistent and because we wanted better, we continued to increase Awesome's CW dose, slowly. The optimal dose of CBD is different for every person and unique to each CBD product. The only way to find the optimal dose is to increase dose until you start to lose gains; when that happens, you know you've gone past the optimal dose, so you then lower dose back to where you were before the reversal of gains started. And so that is what we did with CW. Once we'd maxed out Awesome's CW dose as evidenced by a reversal of her earlier gains (and by then she'd been on CW for 4 1/2 months) we figured we'd gotten everything out of CW that we were going to get out of it. And so, in mid October 2016, we switched to Haleigh's Hope.
Haleigh's Hope (HH) 20:1 gave us a 90% reduction in seizure severity and a consistency that we hadn't seen with CW. No more status seizures. In fact, we literally went a WHOLE YEAR without having to use Diastat to stop a seizure. HH 20:1 also gave us milder seizures. And consistently shorter seizures--in the range of 1-3 minutes. Post-ictal (after seizure) impairments were also no longer severe and no longer lasted several hours; post-ictal impairments became mild and short-lived (half an hour or less). And Awesome's sleep improved dramatically--she suddenly required a lot less and woke refreshed in the morning. But again, we wanted more. And better. And so we continued to increase HH 20:1 dose slowly until we again began to see a reversal of our earlier gains--seizures became longer, post-ictal impairments went back into the the more severe and longer range, etc. When we were sure about what we were seeing, we lowered HH 20:1 dose back down to the dose right below the reversal--which we now knew was the optimal dose of HH 20;1 for Awesome. We let her stabilize on her optimal dose for a month or so, and then in April/May 2017, we switched Haleigh's Hope from 20:1 to 15:1 ratio. 15:1 is product with a greater amount of THC relative to CBD. Since we weren't seeing any reduction in seizure frequency, and we knew that some kids with seizures need more THC to help control their seizures, we figured we'd try more THC relative to CBD.
Haleigh's Hope 15:1 gave us the improvement in Awesome's secondary symptoms as I've described above in this post. In short, it gave us our pre-epilepsy Awesome back. In all her lively glory. 15:1 also further shortened her big seizure length--down to 30 seconds to 1 minute on average. Post-ictal impairments also became very mild and short-lived--and sometimes Awesome simply had no post-ictal impairments at all. And after seizure headaches all but disappeared. Likewise, Awesome's inability to sustain energy equilibrium between meals also disappeared. We stopped pushing food constantly. Her appetite decreased. She ate less, but did better energy wise nonetheless. And ultimately she lost weight; she was quickly back to her optimum weight. But again, as with the other CBD products, we continued to increase dose until we saw these gains start to reverse. But this time, with 15:1, when we passed the optimal dose, the reversal of gains resulted in more serious symptoms. There was a dramatic increase in big seizures. Awesome also had a status seizure for which we had to use Diastat (we'd just passed the one year anniversary of our last Diastat use). And her post-ictal impairments were the worst they'd been in more than a year: severe (left without language for awhile) and then language impaired for several hours.. And so, after giving it a couple of weeks to right itself in case what we were seeing was happenstance (the longer it went on the less likely that it was happenstance), we backed off the higher dose, back down to what we now knew to be Awesome's optimal 15:1 dose. Stabilizing her was a little harder this time and took a little longer. But we got there. After about 6-7 months, we'd again gotten the maximum benefit we were going to get from HH 15:1. And we knew that we could always come back to 15:1 in the future--at optimal dose--and be happy with the results.
But again, we wanted more and better. And so we decided to trial Haleigh's Hope 10:1. HH 10:1 is the highest THC product we can use without having to pick up and become medical refugees in another state that has better laws and better access. And by the way, unless and until we find ourselves in a true crisis situation, we don't anticipate moving to another state and becoming medical refugees. And so, we consider Haleigh's Hope 10:1 our last, best hope in the medical cannabis realm. It's the end of the line cannabis trial wise.
And so now--with Awesome 2 weeks into a trial of half 15:1 and half 10:1 CBD--we're waiting to see what Haleigh's Hope 10:1 might do for us. Realistically, if things go according to plan, I expect it will take at least until about March or April 2018 to know what 10:1 will or won't do for Awesome. And while we're hoping for seizure freedom (the Holy Grail of epilepsy treatment) or at least, more realistically for Awesome, given her history, some reduction in seizure frequency, we're trying not to get our hopes up.. Our strategy is to expect nothing--and maybe be pleasantly surprised. Better this than expecting too much--and being disappointed.
Hope, it seems--however, besieged and beleaguered it may be--springs eternal. No matter how hard we try to be realistic and quash it down so we don't get too disappointed, hope is buoyant. It bobs to the surface again, every time, before reality plunges it below the surface again and it begins looking for another place to try see its way clear again to the surface.
When it comes to Haleigh's Hope 10:1, time will tell. It always does. And any gain at all in the right direction, however small, we will celebrate. Because every step in the right direction is a miracle of sorts for those of us dealing with intractable seizures. And CBD really has been, in that regard, our worker of miracles. Even if it hasn't delivered epilepsy's Holy Grail for us.
*******************It's now three days after Thanksgiving. All the brothers have returned to their lives whether here or elsewhere, whether back to their universities or to their jobs. Our household census, which tends to expand and shrink dramatically many times a year, has shrunk again. Tomorrow we will be back to the usual weekday grind of homeschool, extracurricular activities, and work.
As we think back over Thanksgiving this year, it's been the best Thanksgiving in the last three years. Maybe it's the 10:1 already starting to help; maybe it's just the way some gyrations of some unknown internal rhythms have worked out; or maybe it just sheer dumb luck--pure happenstance--but Awesome's had no big seizures for the past 12 days. Despite all the excitement of the Thanksgiving holiday. And despite us throwing caution to the wind (how many times can you say no to your child before finally saying yes?) in allowing Awesome to cheat on the diet she's on to minimize her seizures triggers. Yes, that's right, we were bad (or good, depending on how you look at it) parents for allowing Awesome to have apple pie with whipped cream three or four times over the Thanksgiving holiday. We expected to pay the price, but nothing bad happened big seizure wise. Sure, she spiked plenty of little seizures, but she was already doing that as a consequence of starting her 10:1 trial or for some other unknown reason, But so long as the little seizures don't get out of hand (above 20 a day that we can see), we don't really get excited or worry about her little seizures. Her little seizures are like the drumbeat in the background that allows us to gauge--by their frequency--how riled up Awesome's brain is. The little seizures don't really hurt anything so long as they stay in the below 20 or 30 a day range.
Throughout Thanksgiving and the days afterward, Awesome continued to be in the midst of everything. To interact. To participate. To stick close by, in the midst of the chaos. And she loved it. She did take short breaks on occasion, to recoup, and to rest. But her batteries now recharge fairly quickly. And she was not only able to hop quickly back into the activity and interactions, but she was motivated to do so. And she was sad to see everyone disperse again.
Thanksgiving is a time to give thanks. And this Thanksgiving we are giving thanks not only for all the usual blessings, but for the blessing of Awesome having been able to participate in Thanksgiving celebrations in a normal way. For Awesome being back to being herself again. Thanks to CBD.
Another time I'll talk about how difficult the last Thanksgivings were--in 2015 and 2016. But for now, for this post, I'll stick with the positive. The happy. And we'll simply bask in the afterglow of this Thanksgiving just past. Thanksgiving 2017. And acknowledge all the good CBD has done for Awesome in these 18 months. Thankfully. Gratefully. And happily.