The neutrality of peace and the certainty of chaos

If anyone is still out there, you’ve noticed I no longer write here. It’s not that life is not still wonderful and confusing, but that I’ve accepted the wonder and confusion for what it is, and it’s softened my desire to publicly ponder. Quiet reverie.

I feel more comfortable now, in this unique-ish mothering role – a little less bewildered and clueless, and a little more in-the-know and fortified. And with that, ready to move on to more bewildering things that I am clueless about.

I’ve started a new business that has been slow (so slow) to ramp up, with little (so little) time. It is named after A and called Arch Inclusive. The services I offer are the services I currently know how to do, and it’s nothing too exciting really, but still exciting. I have been working in this field (digital accessibility!) for 12 years now but have dreams to get more real about it all. You know, make a difference.

I won’t share any specifics that illustrate the enormity of my vision, but generally, I hope to grow a business that not only supports, but demonstrates, the significance of an inclusive community.

A brief update on our guy’s epilepsy, while I’m here: success with cannabis, then rocking the boat with weaning the keto diet. We’re currently back to square one seizure-wise, but with previous successes in July (5 seizure free days in a row!), we are optimistic about finding our footing once again. Slowly, surely, as with everything.

Gentlemen

A was recently weaned off a heavy med and is so much happier as a result. Smiling. Laughing! Things we haven’t seen since A started down this path, taking anticonvulsants, well over a year ago. Over a year ago.

It’s hard to explain the weight of this return. To not see your child laugh for that long, and then to suddenly witness him enjoy spontaneous, genuine hilarity. It happened on the weekend and we don’t even know what was so funny. It just kept bubbling up and out of him, over and over. Moments likes this give perspective… of course there are benefits to meds, but there are real sacrifices involved too. And as parents, we must continuously weigh these two things.

Our long shot hopes are that with clonazepam out of the way, the ketogenic diet might work better, as I’ve read less med interference can improve its effect. The medical world seems to move so quickly tho, expecting change suddenly, and making changes immediately if seizure control isn’t achieved. The Dr. would like us to increase a new drug that A’s on, currently at a low dose. But we have learned to not react so suddenly, to give it time. The process should be more gentle. Always, let’s be gentle. There are nuances, subtleties, and so many endless unknowns within the epileptic condition, that it’s so easy to lose sight of things when moving quickly, especially the little changes which can be so telling. Or the big changes, like laughter, that can shake you out of typical compliance.

So much learning has happened over this past year, a pretty rough year. So much good, grounding, calming knowledge has come to me, in different ways – through reading the experiences of others, through educating myself about A’s genetics, through living A’s ups and downs, through practicing compassion, patience, mindfulness, and through our family’s unwavering love for and joy in each other.

I feel an inner shift becoming more definable, as it continues to gain focus. I hope writing here will become more a part of that process.

By the way, the audio podcast thing is still in the works. I created an episode (or two, or four) but it didn’t feel quite right. Sorry for the false start. It might end up something I just put out there, and experience its growing pains publicly… less trying, more doing.

Calm, happy, safe, competent

This incredible post has so much, so much, so much. But the words that I have copied and pasted into my daily notes are: “calm, happy, safe, competent”. Beautiful advice to any parent on how to nurture a child, and I think I already infuse these elements of goodness into my children, but having some words to focus on can be a useful guide.

It echos an article I read recently about intractable epilepsy, outlining a paper that researched the factors that affect an epileptic child’s quality of life. Some of the factors they examined were things like types of seizures, duration, other disabilities, etc. but, in conclusion, they underline that those with strong familial and peer support had more favourable outcomes. The seizures themselves were of less importance:

Analysis of these data found that peer support, parental support, and mental health had the greatest effect on QoL, with seizure status exerting “a weak, indirect effect on QoL only through the child’s mental health.”

Um, isn’t that sort of amazing? Or is it obvious? I can’t tell. But it is at the very least, an extremely important aspect of this life, this life in raising a special needs kid.

Epilepsy and neurodiversity (can get along)

Coming off the heels of a post about numerous seizures, it might be a good time to delve into the whole “this is a gift!” vs. “this is a terrible sickness” discussion that seem to plague many a special needs community…

AHHHHH.

We just cannot think of people, inherently complex beings, in polarizing terms. Neurological differences can sometimes come hand-in-hand with neurological disorders like epilepsy but the latter cannot be used to define the former as pathological.

If someone has depression, we would not consider his/her entire being as diseased, but recognize that they are suffering somehow, and work to help ease that problem. Perhaps this is a shoddy comparison, but you get my drift, right? In fact, having gone through depression myself in the past, it’s often something I look back on lovingly as a very hard time that gave me immense, grounding knowledge.

Brains are infinitely complicated computers that can sometimes run into wiring issues – it happens to every one of us. Negative thoughts, obsessive thoughts, headaches, vision issues, fatigue, you name it… some obviously more serious than others, but all possible symptoms that can happen as a result of just having a brain. With stigmas, our culture has come to categorize some symptoms as more meaningful than others. The more chronic or holistically-affecting, the more it leaches into defining the person by that issue… and sometimes influencing whether we choose to pass that person over, or invest our time, love, commitment, etc.

If you’ve read other posts of mine, I can sometimes get very reverie-y about the fact that A is an incredibly interesting kid because he is neurologically different. I really do believe in and celebrate neurodiversity, all of the time. To me, being interesting is superior over being typical. I don’t mean neurotypical, just typical… fitting in, being predictable, operating on automatic, etc. But I try to keep myself in check with the whole “he has superpowers!” or “he’s totally the best BECAUSE he has disabilities” because… sigh. His epilepsy is an endless fucking bummer, and I’m sure he’d likely cash in his motor planning issues for the ability to walk and talk in a second. Let’s stay real.

But here’s the thing, I think: innovation comes from adaptation, peace comes from letting go, acceptance, and appreciating the good things when they come, wisdom is born out of struggle. And A is in a position to experience all of these things, always. It’s all he’s known. So it’s inevitable that in time, he really will become an exceptional human being. Not because of his disabilities, not because of his superpowers, not because he is sick, not because he is neurodiverse, but because he is simply human.

If that seems muddled, it’s because it is.

Quick seizure update

In the interest of fellow parents following along with the seizure part of things, here’s today’s email update to the neuro nurse. It’s my first time in awhile sitting down with the numbers and a calendar to add up weekly totals. I always meticulously document each day, but clearly need to do this big-picture analysis more often. I’m guessing the reply might be to go back up on clonazepam and see if the tonics go back down. Sigh.

I should also mention we’ve all been sick this week so that could help explain the jump in numbers in the last while.

Lots of tonics lately. Here are my records so far.

M=myoclonic cluster (some ~2 jerks, some ~15), T=tonic, D=drop. I left out the screaming ones but he has roughly 15 of those each week.

aug:
week 1: 29M, 2T (tonics new)
week 2: 35M, 2T
week 3: 22M, 4T, (clonaz decrease)
week 4: 11M, 4T (clonaz decrease)

sept:
week 1: 7M, 8T
week 2: 14M, 2T (clonaz decrease)
week 3: 15M, 9T (clonaz decrease)
week 4: 10M, 17T (clonaz decrease)

oct:
week 1: 6M, 23T
week 2: 9M, 21T, 3D (drops new)
week 3: 14M, 41T, 1D (clonaz decrease + clobozam started)

He’s now at 1mg AM/0.75mg PM for clonaz and 5mg PM for clob.

Genies

The genetics appointment yesterday was basically pointless, yet still took up a full day with the waiting around, 2hr one-way travel time, meals away from home, etc. Neurology asked them to scan for genes that are known causes of myoclonic epilepsy, to see if any of A’s are affected, in addition to his known microdeletion. Likely not, and even if there is a hit there, it won’t change things or tell us much more than… avoid valproic acid. Which was already a try and fail.

We did use this time tho to get all of our family’s blood taken and sent to Georgia State University for a study there. One of the researchers seems to be particularly interested in the genes that A is missing, so we’re signing up as a data point. It too won’t tell us much more than what we already know, but it’s our contribution to SCIENCE! Maybe someday A will have a paper written about him. Today, I must scan and email 50 pages of consent forms.

Weirdly, his neurologist wants us to add another medication called Lamotrigine. I say weirdly because we are still just 6 weeks into the ketogenic diet and from what I’ve read, it can take longer than that to tweak/click. In the meantime, medication can gets in the way. So why add more? Especially when the likelihood of yet another drug working at this point is quite low.

At yesterday’s appointment I exclaimed, “Nobody knows anything!” because… it’s true. It’s all such one big experiment. There are no sureties, comparisons, or predictabilities in this realm of the undiagnosed child. There is only time. And perhaps luck.

Do we start a new medication, especially when the last one was SUCH a bust? Do we remain patient with a limiting, time-consuming, pricey diet? Do we attempt to chart the waters of medical marijuana oil? Time, guide me. Universe, give us luck. Let our scientific donation pay us backward in this circular orbit of space-time.

E contemplates ginormous zucchini

Happy anniversary

You know life is busy when facebook reminds you “today’s your wedding anniversary!” Hubs and I had a giggle. He grabbed wine and I grabbed pizza so it was all good. But it’s been that kinda summer. It is also the one year anniversary of A’s epilepsy.

A’s now three weeks into the ketogenic diet and seizures are still sucking, but we’re hanging in. I should also update my terminology: what we’ve been calling seizures are actually seizure clusters wherein he has several seizures in a row. So our 10 seizures a day actually means around 30/day, if each cluster is around 3 jerks. Know what I mean? Anyway, lots of them still. Last night he had a rarer one that lasted over 5min (so maybe ~30 seizures within that time). Sounds way more scarey that way, doesn’t it? Ugh.

A continues to be smiley and bright, relative to how he was. We’re loving it. Also with the return of emotion comes more… two year old moodiness, which is cool too. But this morning A was sorta fake-crying and I felt so desperate to have a shared language for him to explain what was bugging him. With a combination of PECS and a chat on the talker, I think we narrowed down that a cut on his finger was sore. I don’t really know tho, since so much of it was guided by me.

Keto update

A’s seizures have increased from 4-6/day before the diet to now double, around 10/day, and a lot more screaming during them. Yet bizarrely, it still feels like we’re going in the right direction. It’s early yet, and tho clearly A is not one of the lucky children to immediately become seizure-free a day or two after starting the diet, he could be one of the lucky children to become seizure free in several months. His Dr. thinks it’s likely related to the valproic wean too, and adjusting to that. Patience, patience, patience… and wine. Wine is good. And coffee.

My side of managing a ketogenic diet is going just fine – the choosing of recipes, weighing, planning, etc. to me does not seem like that much more work than planning and preparing any meal. Two things that’ve changed to try to make life easier/better for us all are: I started eating meat, after 16 years of vegetarianism (there’s a great shop nearby that sells horomone-free, grass-fed, happy-animal, local meat), and we bought a microwave, which we mostly thought of as being unnecessary and kinda silly. Both have been good choices in terms of simplifying and streamlining a busy kitchen life.

Been inspired to pull out the iPad mini more often, and model AAC. It ebbs and flows, but should be more consistent. Looking for a cheap, used iPad so we can have one for each kid, since it’s really really hard to let A use it without E interfering, and I believe E should have access to language too. Also, an iPad is bigger, and bigger buttons might help improve A’s usage of it.

I’m working on a new project to go along with this blog. It will be… interesting! It takes away from some of the writing time here but I think you will like it.

The real day uno

Full ketogenic diet today – full calories. Bowls of butter and coconut oil. Weird feelings scooping it into my child: insanity, humour, and hope. Mostly hope.

A had 8 seizures today, that I could see. More than his usual 4-6 but I think it might just be that I am staring at him more, on this trip. I’m not in the next room cooking dinner or folding laundry while we chat or weeding the garden while he plays. I’m sitting next to him, strolling him around, snuggling him in bed, showing him things in the playroom. We’re together most of the time (except at night – grandma’s on duty then – but he doesn’t visibly seize while snoozing). They last seconds, so easy to miss, unless you’re with him always.

If this diet is going to work (as it does for most kids – 30% improve by 90% or more and another 30% by at least 50%), we’ll notice a change in the next 6 weeks. Back to CHEO for a follow-up appointment in a month or so, and they’ll do another EEG around then as well. Even if seizures are still happening by then, but the EEG shows improvement, it means we’re on the right track and it may just take awhile to improve further. So much promise.

While in hosp, he’s been more quickly weaned off the shitty med he was on since Feb – tomorrow’s the last dose! The zombie-ness has been shed and A’s way more animated, and as I said last night, smiling! I do this thing where I run full blast from another room and jump on top of him, similar to Will Smith’s fresh prince elbow trick, and A is just beside himself with glee about it. Me too. Parenting makes you ridiculous. You do what it takes.

A around a year old

Day two

The measuring-stuff part is easy. The tricky business with A is getting it into him without spilling, splashing, dropping, or losing bits and pieces of the carefully weighed food and liquid. I’ve therefore been spoon-feeding and giving the cream in a syringe – totally weird but effective. It all gets in and he’s cooperative and seemingly cool with it. Hoping once we’re home vs. hospital, we can figure out a way to get him to feed himself with less mess. Likely doling things out slowly/surely, and finding a more useful sippy cup. Till then, mama-fed.

Day two:
breaky – eggs, applesauce, cream, butter
lunch – chicken, carrots, cream, butter
supper – ground beef, applesauce, cream, butter

Yes, you detect a pattern.

Today was 2/3rds the calories, and tomorrow will be the full diet and starting to measure his pee for the presence of ketones (the result of burning fat and A’s new fuel, replacing glucose). His blood sugar is being measured via toe prick and glucometer before each meal. This morning it was low (2.9) but went up quickly with 20mL of apple juice. Before dinner it was low too (3) but no juice is given unless it’s below 3. They’ll be monitoring throughout the night. I think this is normal when initiating the diet, so not too worried about it, but it’s part of the reason we’re in the hospital for the week while his body changes over.

A had a somewhat scary, longer-than-normal seizure before dinner as well (a few minutes long vs. a few seconds). Not sure what that was about. A little freaky. The stress of the hospital and diet changes? The metabolics of the switch? Med tapering? All of the above? Keeping an eye on him, but hoping this won’t happen again, or if it does, is short-lived and he’ll normalize soon. Nonetheless, it’s perked up the nurses and they’re keeping a more careful watch on things, and a rescue med has been documented just in case it goes on longer than 5 minutes. A little nervous about the possibility of that, but I guess it’s an okay plan.

Looking forward to getting over the hump.

p.s. he seems to be smiling a little more, as before (before when? I can’t remember. It’s been a long time. But this alone is cheering me.)