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.

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.

Inclusion and unlearning

A now has a special diet to go along with the rest of his special-ness. I love him so much, and I hope this food clicks with him – it’s totally worth putting in the extra time to feed him in this therapeutic way. So far, no big changes seizure-wise (maybe a touch more, actually – tho I’ve read that often they can dip into being worse before getting better), but lots of energy/awareness. Not sure how much to credit the diet vs. being off the valproic.

I’ve resisted emailing the daycare’s director to thank her for accommodating A, for providing the attention and care that he requires, because I wonder if this might be the opposite of what inclusion looks like. If I truly have faith in a mandate to incorporate every child, a thank you for meeting his needs doesn’t seem appropriate – I should assume it is just so: normal, easy, natural, and not putting anyone out. To commend might insinuate it wasn’t expected, and that would be strange.

Tho I’m sure I can phrase a thank you in a way that doesn’t imply “you’ve given extra of yourselves” and instead says, “you do what is good and right and I so appreciate this.” I am thankful for inclusion and to those that practice it daily. I will send something soon.

Today as I presented A’s ketogenic lunch and snack (neatly measured, labelled, and packed by me last night) and the rules that go along, I realised the zeal I feel for this new chapter might actually be felt as burdensome for others, regardless of good intentions. It made me feel deeply sad and worried for A’s well-being. In the end tho, the zeal seems to be mutual, and I am again very thankful for the kind and thoughtful people of the world. We’ll make whatever we need to work work however it needs to, with whomever’s involved, and I’ll try to feel indifferent about any “impositions” – rather, I will refuse to see them as such.

I’m naturally apologetic, polite, quick to get out of the way. Yet to say “Sorry, but X, Y, and Z” when talking about A’s care frames things in a light I never want to shine on him, I never want him to overhear: it is a trouble to care for you. I feel the exact opposite. I am honoured, daily. I find it difficult to reflect this in words, particularly when instructing others, without sounding unappreciative, entitled, ignorant to the fact that there is learning and energy involved. I therefore try to pepper what I say with lots of smiles and enthusiasm. Or when writing, with smiley faces and exclamation points. It’s exhausting to police oneself in this way, a balancing act between presumption, respect, dependence, and gratitude, without making it too fuzzy so as not to be clear.

When reading about homeschooling, “unlearning” is a term sometimes mentioned. What I’m saying has nothing to do with homeschooling, but everything to do with unlearning, so just mentioning for context. The niceties and social language that I have absorbed over the years is sometimes in such conflict with how I truly feel about things surrounding A and his needs. I am teaching myself another way. Language has its landmines. Sometimes things flow out of my mouth that I am not comfortable with, simply because it is just “what you say”. Can’t think of a specific example right now, but it happens. Maybe I should make business cards for this blog. I’m sure A would love his mother passing those around (not!).

“Acceptance” implies power in the accepter, for being generous enough to allow the way one exists to be allowed.

“High or low functioning” measures against a scale of things not really measurable, where “functioning” is subjective to whomever’s using it.

“Accommodation” has strange connotations that subtly imply allowance. It’s the activity of an infrastructure to sigh and rework something, grudgingly making room for someone on the margins of typical essentials. If accommodations need to be made in an existing system, it is proof that inclusion isn’t inherent. Nonetheless, it is often the best thing one can hope for these days (we live within so many archaic systems) so it is a satisfactory effort, such as it is.

I also struggle with “getting permission” for things, when what I’m asking is necessary for my son’s ability to exist as typical children do. But that’s enough ranting for one day.

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.)

Day uno

I’m quite tired and not feeling elegant so just a quick recap:

Happy 35th to me – A admitted Sunday night and we were instructed to “try to keep him awake all night.” I knew he needed to be tired for the EEG on Monday, to sleep during it, but didn’t think he needed to be THAT tired. Turns out I was right and it was a mis-communication, though didn’t learn that till Monday. Thus, an all-nighter for all.

Successfully snoozed for EEG. His results were improved since April’s – we’re guessing weaning off the valproic acid might be the reason. Still crazy seizure activity most of the time, but in bursts again instead of constant noise. I was slightly surprised that sleeping didn’t relieve him of seizure activity – that’s always been his “down time” in my mind, but I guess not. The technician noted that often it’s worse during sleep. Ack!

EEG’ing

Blood tests and some concern over his pneumonia but all seems well. Right, did I mention the pneumonia? Wheee. Had brought him to emerg last Thurs and he’s on a third round of antibiotics, tho was told today they’re guessing it’s viral. Regardless, he’s getting better. They’re wondering if there’s maybe some asthma going on that’s making the cough tough to kick. Might have to deal with that later on. Too many changing variables at the moment.

Today was the first official start of the ketogenic diet. All liquid meals to begin: 3 keto-shakes (using ketocal powder) so not super exciting for anyone, but some food tomorrow. They don’t initiate with fasting here, but instead he got 1/3 calories today, and 2/3 tomorrow.

It’s a bit nuts to balance two kids in this environment, but my mom is a huge help. Seems to work that she provides the distraction while I tend to one kid, then distracts that kid while I give attention to the other, and we bounce around like this all day.

Ketogenesis

I always knew A’s seizures were disorienting, impeding, distracting for him but I guess the full realization of this is only really sinking in now. My hopes for the upcoming journey are high.

We were seen by the top neurologist/epileptologist at CHEO last week (referred by our first neuro who wasn’t sure what to do next) and her take on things was… refreshing. He’s over-medicated, still seizing constantly, and so a perfect candidate for trying the ketogenic diet. I literally slapped her knee and shouted “no kidding!” when she told me because till now we’ve been told diet changes wouldn’t help him. Hubs and I have always felt this couldn’t be true.

When the neuro said that there’s sometimes a wait list for starting the diet, I asked where A would be on that list and she said at the very top. We’ll be admitted to the hospital this weekend, for a week. I think this was the moment I realised my “it’s not so bad” attitude just wouldn’t apply here – it is bad. His EEG has been extremely active for a year now and is only getting worse. I’m afraid for the future, for the progression into grand-mal seizures, for his lack of development.

The keto diet involves changing your body’s chemistry from one that is fueled by glucose (from sugars and carbs) to one fueled by ketones (residual from burning fat) so the diet is… 90% fat! It is extremely calculated (I just purchased at scale that measures to 0.1g) by a dietician and requires supplements and… it’s basically a lot of work. I’m up for it though, obviously. Apparently most kids on it do experience positive change – whether the degree of change is worth the energy the diet involves or not is usually subjective to the parent’s idea of success. My hopes are simply for less static in his beautiful brain, so that he might get to experience and enjoy life more. I am not expecting him to become seizure-free or transform suddenly into a typical child as a result but I do hope for less medication and less seizures. I hope he can be himself, more. And I’m so anxious to meet him there.

I’ll likely be writing every day next week from the hospital to document our journey (both his and mine) in starting the ketogenic diet. It’s gonna be nutty (literally?). My mom and 7mo old E will be with us too, as E’s still breastfed and hubs is working, so that will be crazy and nice.

I don’t think the reality of this life-changing path has sunk in really – it still feels at a distance. But as I watch my gorgeous boy decline into a shakier, less cheerful, less interested, sleepy guy, I know that there must an alternative, and that this is it.