Tag Archives: health

It’s after midnight

15 May

…that makes it May 16th.

Three years ago today, I recorded 2 tonic seizures in Jade’s logbook. Those were the last seizures we ever observed. Somehow, maybe because the diet was and remains so consuming and rigorous, I can’t fully comprehend that span of time.
But I know, academically at least, that 3 years is a big milestone.
And I realized earlier today that even though there are a number of Jade’s medical issues that continue to make me anxious, it’s been a long time since I fell asleep straining to hear a gasp in the night, counting another seizure. It’s been a long time since I watched her and ached over her constant fatigue from fighting seizures, and over her sedation from fighting her drugs. It’s been a long time since I’ve had to hover by her side, waiting to catch her in case a drop seizure snuck up on her to violently throw her to the ground.
Today she is going to audition for the school talent show. She’s planning to dance. She’s never taken dance, but that doesn’t matter. She believes she is wonderful. She believes she is special. She believes she is smart.
She knows herself. And she doesn’t remember having seizures.
I do. But, after three years, some of it is starting to fade, just a little. And all I can say is… thank God.

More than skin-deep

21 Jan

My friend Barbara wrote a post about skin last week, about how it acts as a protective barrier against germs and toxins.  But most of us also know (or believe) that skin is permeable; the degree of permeability is sometimes debated, apparently.

But if you’re the parent of a keto kid, you probably don’t care about the debate much.  You might think it strange, but we worry about our kids absorbing carbohydrates through their skin.  Here’s a interesting “whodunit” kind of story that is also a cautionary tale…

Michelle lived in the city but, during the summer, the family spent weekends at their beach house.  She did well on the diet throughout the winter, with a marked decrease in seizure frequency.  In the summer she again began having increased seizures, although only on weekends.  The family would go to their summer house on Fridays.  By Saturday, Michelle’s ketones would be low, and her seizures would increase.  Her parents turned themselves inside out attempting to find the reason.  They checked the foods, the environment, and finally decided she must be allergic to the beach and their pool.  They were about to sell the house.

At last, together with a nurse from Johns Hopkins, they again went over everything they did on Friday and Saturday.  “When we arrived at the beach, we lathered Michelle with suntan lotion,” they told the nurse.  Aha!  They checked the suntan lotion label: It was in a sorbitol base.  Apparently, enough sorbitol was absorbed through Michelle’s skin to affect her ketones and alter her seizure threshold!  After switching to a sorbitol-free suntan lotion, the family continued taking Michelle to the beach with no recurrence of seizures.

from The Ketogenic Diet, by John M. Freeman et al. — 4th edition

The online keto forums often have questions from new keto parents about which toothpastes, skin creams, and shampoos are “keto safe”.  Some parents even make their kids wear vinyl or latex gloves (and it’s not easy finding them in kids’ sizes!) when playing with play dough, finger paints, or other potentially carbohydrate-laden substance.

We let Jade play with play dough (she has to wash her hands afterward, though!) but I have found the skin cream thing to be more difficult.

We’ve a very dry climate up here in the Yukon, so lotion is a must.  I’ve used a variety of very plain lotions, but have never really been happy about their ingredients.  I’ve tried straight coconut oil, but it is (unsurprisingly) greasy on the skin, and I don’t find it absorbs very well all on its own.  There are a few places in town that make natural skin creams but to it costs too much to keep all the skin in our family covered.

I have started to experiment with making my own lotions.  The first two batches I made were a lovely consistency but started growing mold within a week.  Yech!  Just before Christmas, I tried a third time, sterilizing all my equipment and adding some natural anti-fungal ingredients (rosemary, lavender, and grapefruit seed extract) and — hurrah! — that seems to have solved the mold problem.  But after a few weeks, the water and oil started separating too much.  So it’s back to the drawing board for me… but I’m close, I can feel it!

The one thing that’s really causing me to procrastinate is, well, it’s no fun to wash lotion off spoons, measuring cups, and blender blades.  And this time I won’t have my mom to help me.

And you know, since we’re on the subject of skin, I read another really interesting post about skin this week, written my my gal, the one and only Scientific Chick: Dogs have owners, cats have staff, and children have rashes. Click on over there.  With a title like that, you know it’s going to be a fun read.  It even starts with a cartoon.

Bulgy went a-walkin’

3 Jan

You get to do a lot of people-watching when you have to wait in a grocery line-up for 30 minutes.  You also get to read all the headlines on the magazines in those racks by the cash registers.  I rather enjoy reading the gossipy titles of articles I’m not that interested in, often regarding people I’ve never even heard of.  It’s the literary equivalent of a potato chip.  Some of the titles are so tantalizing, even though the contents are undoubtedly fluffier than cotton candy.

While in the interminable line-up today (WHY did I go grocery shopping on a holiday Monday?!) one headline seemed to smack me upside the head:

“GET RID OF EMBARRASSING BACK AND BELLY BULGES”

it screamed.

Guess what?  I was at a party last week and was asked by two people if I was pregnant.  (I’m not, just in case you wondered.)  Clearly, the clothes that I was wearing combined with the delicious mom-cooked supper I had eaten combined to create quite the belly bulge.  Happily, I’m comfortable enough in my own skin that I wasn’t mortified.  In fact, I was highly amused.

Okay, maybe I should exercise a bit more — that’s true for most of us.  But telling me that my totally normal-looking body should embarrass me?  Is infuriating.

There’s no real point to this little rant.  We’ve all seen this headline and its five thousand and one variants.  And I’m certainly vain enough that, yes, I do spend time on my hair and makeup (not to mention clothes and jewellery).

But, to me, this kind of headline just sounds like bullying.  It makes me want to scream right back,

“STOP MAKING MY GIRLFRIENDS FEEL BAD, JERK!”

Hmm, if only problems could be solved by screaming, I’d have the whole world fixed by now.

I blame the hormones

5 Nov

My mom is making life so much easier.  She’s doing so much more than just feeding us and doing dishes, but even if that’s ALL she did, it would already be a huge relief.

Jade had only TWO drop seizures yesterday (down from 6, 6, 9, and 11 from the previous days) and I’ve only seen one body jerk and one very short absence.  She has so much energy today that even though we put her down for her nap (in her new big girl bed) at 1:00, she wasn’t anywhere near falling asleep until 2:00, and that was only after I went downstairs and put her diaper, pants, and socks back on her!

We’re still struggling a bit with meals, but it’s definitely getting better.  I got a gingerbread cookie recipe from the dietician (almond-flour and KetoCal formula base) that worked well for Jade’s snack today, although I had to bribe her with stickers to finish her “strawberry milk” (cream with vanilla and red food-colouring and a wee bit of water).

All in all things are going great!

And yet all I want to do is cry.  What in heaven’s name is wrong with me today?

The roller coaster

2 Nov

I was actually in bed by 11 last night, which is early for me.  But I was totally drained, having spent half the day in tears.  It was a truly awful day, fighting with Jade to make her eat and take her medications.  You’d think that a girl who says she’s hungry wouldn’t be so picky.  And she never was this stubborn before, making me wonder if it’s the Keppra (her newest drug, one of the side effects of which is behavioural problems).  Not even a week into the diet and I was wondering how we were going to survive.

Fortunately, other than a really nasty drop seizure (read all about it on Michael’s blog) today went much better.  Fewer seizures than yesterday, better cooperation with eating, more happy, chatty, normal time with Jade.  Her “meals” were actually more liquid (we gave her KetoCal formula) but since she’s not drinking enough these days, anyway, that’s not a bad thing.  I did nearly break down completely when she begged us for banana and then bread, but then she snapped out of it about 15 minutes later, distracted by some shiny stickers our friend Janet left here, and wasn’t even hungry.  I’ll have to keep this in mind next time she has a breakdown over something she can’t have.

I was reading an epilepsy support website yesterday that suggested that one of the worst things about epilepsy, for parents, is the fear.  The actual amount of time Jade spends having seizures is miniscule compared to the amount of time I spent fearing when the next seizure will come.  It’s true that sometimes the results are heart-breaking (the scabbed lips and nose, the dented forehead…) and that there is a real danger for her.  It’s also true that I can’t possibly catch her every time.  Even before I read this thought, I already recognized that it scares me when Jade climbs up onto a chair or play structure or a bed or, well, anything, and I struggle with trying to balance letting her be a kid with normal bumps and bruises, and trying to protect her from her condition.

Somehow, though, recognizing the huge imbalance of time spent seizuring vs time spent worrying about seizuring has been a very powerful thought for me.  While Jade continues to have these awful drop seizures, there’s no way for me to completely forget the fear.  I still have to do my best to protect her.  But maybe this thought will help me be more optimistic and less fearful when we really start to see more improvements.

Lessons learned today:

  • a good night’s sleep goes a long way to creating emotional stability for mommy
  • meltdowns over desired foods don’t last forever and seem to be quickly forgotten
  • fear may not be the only thing to fear, but it still needs to be put in its place

Please God, let us keeping having days that are better than our yesterdays.

Home free

31 Oct
Ready to go out

Ready to go out

God, it feels good to be home!  I was discharged from the hospital on Wednesday afternoon, having apparently passed the kidney stones (and also, apparently, averting the desire of one of the OBs to INDUCE LABOUR — he must be INSANE to think I could go through childbirth without first recovering from the kidney stones!) and spent the rest of the time in Vancouver running around to grocery stores and hospital appointments and cooking fiddly recipes full of cream and butter in which each ingredient must be weighed to within 0.2 grams.  So this is the first time I’ve had a chance to get back to the blog, even though I originally fully intended to keep it up to date during the whole diet initiation phase.  Yeah well, the Universe had other plans.

[Paranoia aside:  I worry that those of you who don't actually know me in real life will start thinking that we're making up all this stupid drama in order to get attention and sympathy.  Because I hear there are people out there sick enough to do that.]

So, I missed half the training at the hospital because of the damned kidney stones, but since we’d done so much research ourselves before going down, it really wasn’t a big deal to catch it all up in the one session I got to go to on Thursday.  Plus I got a chance to ask the questions I had.  The whole week became more about making sure Jade got a good start than it was about teaching us.  The keto team was pretty darned impressed with Michael.  (Sadly, it seems they don’t have much faith in fatherkind.  They said they get nervous when dads come without mums to keto initiation, but they didn’t say anything about mums coming without dads, which probably happens a lot more often.  Lucky us that Michael is such an awesome dad.)

As for the kidney stones, I hope to hell it’s something I never have to go through again.  Besides the joy of having to pass all your urine through a sieve (to look for stones), staying hooked up to an IV (to pump the body full of fluids), and spending your time in one of those gorgeously fashionable hospital gowns with your ass hanging out the back (because who has time for underwear when all you’re doing is sleeping and peeing?), there is the pain.  No two ways about it, the pain is awful. I spent a whole night and day on morphine — I’ve never slept so much in my life.  Every time I asked for a shot, it was after struggling with guilt and fear and going for as long as I could stand it.  If I get morphine, it means Nugget gets morphine, and I really don’t need another drug addict baby around here, yanno?  But let me tell you, I needed something to stop the pain, if only to stop all my other muscles from tensing up (my abs were very sore by the time the kidney stopped hurting).  People, I tell you solemnly, I WOULD RATHER BE IN LABOUR!

Tail dragging in the snow -- I love that this costume allowed Jade to wear warm clothes underneath!

Tail dragging in the snow — I love that this costume allowed Jade to wear warm clothes underneath!

There were some nice things about the hospital stay.  I met some very nice doctors and nurses (I LOVED the admitting doctor at Emerg).  And the hospital was close to the New Westminster waterfront, so I got to hear train whistles blowing, a romantic sound when it’s just heard from a distance.  And they did an ultrasound to check out my kidneys, ovaries, and appendix (couldn’t see the appendix because of the baby in the way), so I actually got to see Nugget’s face!  Being so late in pregnancy means there’s a lot more detail, and my sister got to see it with me.  We even watched Nugget make sucking motions with a hand in front of his/her face.  Nope, still don’t know the sex; I specifically told the tech I didn’t want to find out.

This whole week has been such a roller coaster, it’s left me extremely hormonal and emotional.  I will cry about practically anything.  The idea of other kids being sick like Jade.  The idea of other families being normal and not having sick kids like Jade.  Watching Jade hit her head yet again with an ill-timed drop seizure.  The fact that Michael had a Nanaimo bar dessert on the plane even though Jade was awake, because I really wanted one but it wouldn’t be fair for both of us to have one and not give one to Jade when she can SEE them and is asking for them.  Somehow losing my coat in Vancouver, even though I never actually wore it there.  Jade not finishing her meals, when it’s so important that she does.

I really hope a good night’s sleep will fix me up.

In the meantime, it did my heart good to watch Jade out trick-or-treating.  The neighbours were great about giving out our special non-food treats, and one of them even bought her an extra gift that Jade absolutely loved — a kit containing an activity book, paints, brushes, glitter glue, and other crafty goodies.  Plus, one of my bloggy Whitehorse friends went out of her way to find us some of the harder-to-find ingredients that are important to Jade’s new diet (36% cream, coconut oil, old-fashioned-no-sweetener-added Kool-Aid) and she’s dropping them off tomorrow morning.  And Crook and Nanuq were both well looked-after while we were away.  And my girlfriend down the street reminded me again to make a list of people to invite to a food shower she wants to organize to fill up our freezer for when Nugget arrives.  People are so good to us.

It took a few houses before Jade got brave enough to actually say "Trick or Treat".  Notice Michael's clawed face.  What a vicious lion.

It took a few houses before Jade got brave enough to actually say "Trick or Treat". Notice Michael's clawed face. Vicious lion...

Stunned

21 Oct

The world got turned on its head this afternoon and I’m still rather stunned.

Last Wednesday, I sent an e-mail to the neurology team at BC Kids asking some urgent questions about what to do about Jade’s constant seizures.  Because of a mix-up, we didn’t get a response until today, even though Dr. Huh actually wrote her response before the weekend.  We had one of the worst weekends of our lives (as you all know), and I called again this morning hoping for some answers.

We ended up getting four phone calls from neurology.  The second one is the one that’s left me stunned.  That’s the one where they told us that a space opened up and they can put Jade into the ketogenic program next week.

!!!!

The question really wasn’t whether or not to get Jade down to Vancouver next week.  We’ve been asking ourselves how we could possibly survive another month like the last couple of weeks, so getting Jade into the program right now is truly an answer to our prayers.

The question was whether or not I should go down, too, given how pregnant I am.  I want to be there.  It’s important for me to be there to learn how to calculate the meals and implement the diet at home.  Also, let’s face it, if I had to stay behind, I would go absolutely insane.  Jade’s doctors want me there, too, if at all possible.

The good news is that my “official” due date on the doctor’s records is later than what I’ve been writing on the blog because it was never corrected based on the ultrasound.  So after talking to midwife Heather (and getting some Vancouver midwives’ phone numbers just in case) we’ve decided that it would be best if we can all stay together, if it can be arranged.

Jade will start the diet on Monday.

UPDATE: Yukon Medical Travel was in touch with Michael this afternoon to say we can pick up our itinerary from Marlin Travel tomorrow afternoon.  That means we’re all going for sure!  Yeee-haw!

Finding Jade

19 Oct

Can anyone tell me where my daughter has gone?

For two weeks now, Jade had been waking early in the morning with clusters of seizures we’ve had to break by using emergency medication.  Up until last week, that was Valium.  But that drug has to be administered rectally (not fun for any of us, least of all Jade) and we’d been noticing that it was becoming less effective.  It used to be that once administered, she’d go for a whole day with no seizures at all, since the Valium was still in her system.  Now it still seems to stop the clusters, but she continues to have seizures.  All day long.

While we were in Vancouver, we asked about an alternative and Dr. Huh gave us a prescription for Midazolam.  That’s the same drug they tried to use for Jade’s first spinal tap, the one that didn’t sedate her but made her loopy, instead.  The good thing is it can be given orally, so we’ve tried it a few times.  Who cares if it makes her loopy if it stops the seizures, right?  Since we’ve gotten home, she’s had the Midazolam about five times, including twice today, the first time we’ve ever used emergency medication twice in a day.  In fact, she’s supposed to be sleeping right now, but she’s so wired from the Midazolam that she’s upstairs with Michael, who is trying to feed her since she’s hardly eaten all day.

This whole cycle scares the crap out of me.  There’s a very real and very scary chance that she could suffer brain damage if we let her seizures go on for too long.  That fear tortures me.  But the more we use the emergency meds, the less effective they are.  We have a two-year-old whose body is already addicted to drugs.

For the past few days, it feels like Jade has been disappearing.  She spends a lot of time tired and emotional and asking either for a bottle of warm milk (she has gone through 8 litres this past week!) or asking to sleep. When she tries to sleep, she has seizures that wake her up.  Sometimes she seems to be in a fog (Michael describes it as being “drunk”) and other times she just collapses on us and cries and can’t verbalize what she needs or wants, as if she’s forgotten how to talk.

When she’s actually alert, she’s been getting into everything and testing us, like pulling Crook’s tail repeatly after being told not to.  Granted, that could be her being a toddler, but to me, it’s just not like the child I know she is.  I can’t explain it, but it’s just not her.

Every once in a while, we get a glimpse of her real personality, and it’s like a burst of sunshine in cloudy weather.  I think, “Hey, look, there’s Jade!” and I wish I knew how I could keep her from slipping away again.

The breaking point

19 Oct

When I was in junior high, I read a book about a girl whose father had a mental breakdown.  I’d never heard of mental breakdowns before and found the topic rather intriguing.  My parents are extremely hardworking people, and I remember asking my dad, “What if you had a mental breakdown?”  I still remember his response clearly, delivered with a dismissive snort: “That’s not my style.”

I don’t think it would be too contentious to say that there are people who really are mentally tougher than others, some who are more prone to panic, some who are more stoic.  I also think that if you put anyone under enough stress for long enough, there will be a breaking point.  But I am thankful that I seem to be cut of pretty sturdy cloth.  Like my dad, I’d rather hope for the best, look for solutions, research, analyze, whatever it takes to get through things.  (Unlike my dad, I’m a lot more likely to actually express my emotions while I’m doing it — but then, I don’t have the burden of a Y chromosome.  Ha!)

Over the last couple of months my standard response to, “How are you?” has become, “I’m hanging in there.”  I can’t lie and say things are great, but at least it’s true that I’m doing what I can.  The standard response to, “You are so strong!” is, “You do what you have to do.”  What else can we do when we have no choice but to live the life we’re given?

Well, my friends, the truth is, I have reached a breaking point.  Maybe not the breaking point, but I can feel my strength ebbing.  The last couple of weeks have been pretty nightmarish (more about this in another post) and I am starting to crack.  I was on the brink of tears all day today.  I am bitter and angry and even resentful of well-meaning remarks, which is totally unfair.  A few days ago I thought wryly that maybe we’re going through this now so that when we finally get to start the keto diet — and we immediately see miraculous results, of course — it will seem easy to deal with by comparison.  But right now, I don’t know how we can possibly go through another month of this.

Fighting the mold monster

16 Oct

Once upon a time, we bought a washer and dryer.  They were front-loaders.  They were stackable.  I was in love.

We just finally got them stacked last week.  While we were in Vancouver, Tim did a laundry room renovation that makes the teeny room seem twice as large as before.  I was ecstatic!  It really is a great thing, but it’s not what this post is about.

I’ve been noticing for a few weeks that the washer has a moldy, mildewy smell in it.  And some of our towels seem to smell that way, too.  Although I never did before (for safety reasons), in the past few weeks, I started leaving the front door of the washer open to let it air out.  And since I can access the machines more easily in our now-spacious laundry room, I gave everything a good wipe earlier this week.

Then I read this post on the Home Ec 101 blog.  I had never ever heard that front-load washing machines are prone to mold growth.  Since it’s apparent that the machine already has a mold problem, I did a search on how to resolve the problem.  It’s scary, but from what I’ve read, it’s not necessarily an easy fix.  Although I’ve been noticing the mold smell only for the past few weeks (and I thought it was because SOMEBODY had left wet loads of laundry in the machine for SEVERAL DAYS, but I’m not saying WHO…) it’s possible that this is a problem that’s been building up for a while.  That scares the crap out of me.  What if this is what’s been causing us to get so many colds.  Or if it has something to do with Jade’s seizures?

I literally found out about this issue just now, so I haven’t actually tried to check out the machine to see where the mold might be yet.  I’ll let you know how the battle goes.  And if you have any tips for me, please let me know.

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