Tag Archives: ketogenic diet

The best of times, the worst of times

30 Nov

For four days now, I have skipped putting Halia down for her afternoon nap.  The first two days, she slept for 12 solid hours.  Last night she woke up once at 3 a.m. and wanted some boobing.  Tonight I’m hoping for the 12-hour miracle to repeat itself.

Now if I could just get myself to bed at a reasonable hour, I might become a productive member of society again.

No, really, I am sooo happy with my set of problems right now.  Balance is a hard thing to find.  Working, even half-time, has added a lot to my plate, so that fitting in parenting (single parenting a lot these days, with Michael on the road), keto cooking, music, advocating for Jade, blogging, and sewing are all jostling for attention, and they can’t all win.  Or else they do, but then I’m a cranky miss crankerpants to everyone around me.  Let’s not even talk about stuff like exercise because that just doesn’t happen.

But even though it is exhausting, it is good.  Jade has gone six months seizure-free. (!!!!!) Halia makes magic everywhere she goes.  What more could I ask for?

But! Yes.  It is exhausting.

I was talking to a good friend the other day; she has two grown sons just a little younger than me, and one of them had some very strict food allergies as a young child, and also required some accommodations when he was going to school.  When I talk to her, I feel she understands a lot of what I’m going through now.

“I don’t want to complain,” I said to her.  “I know plenty of people who’ve got it a lot harder than I do.”

“Yes,” she said.  “That may be.  But you can still acknowledge that your life… your situation is a lot harder than most.”

That made me pause.  Thank you, friend. Thank you for letting me feel that I am allowed, at least once in a while, to not like being exhausted.

There are lots of reasons why I don’t want to complain, lots of reasons to feel that it’s ungrateful to do so.  Everyone lives with the same reality of 24 hours, seven days a week, and the miracle of tasks that expand to fill every last square inch of time.

But maybe today I’ll try not to feel ungrateful just because I’m not glad that Jade has to be on a ketogenic diet.  I can be grateful for the miracle it has wrought without liking the daily consequences.

Maybe today I’ll acknowledge that leaving the dishes for tomorrow morning — or even tomorrow night! — might just be the best thing for me to do.

Maybe today I’ll go to bed at a reasonable hour.

(And maybe, just maybe, Halia will sleep through the night.)

Angel interference

5 Nov

As I mentioned the other day, our caregiver broke her wrist. 

Jade attends a therapeutic preschool program at the Child Development Centre four afternoons a week.  It’s fantastic for her to have access to her therapists that often, but since it’s just a couple of hours a day, it’s not enough for me to fit in all my hours of work.  So we have a caregiver who has been trained in keto cooking and knows the girls’ routines inside and out.

Unfortunately, when Nanny (not her real name!) broke her wrist, she did a really good job of it, and broke the one in her (dominant) right hand.  Now she can no longer drive her (standard) vehicle, and she can’t scrape the oil out of Jade’s plates and bowls.  Quite aside from that, there’s the fact that she’s a single mom to an active toddler, a student, and broken bones hurt, yo, and you can see that this is a situation of supreme suckage.

I felt terrible for her.  And I was also worried about how the heck I was going to get to work for the next six to eight weeks.

Worried, and yet not panicked.  I was able to go to work on Tuesday, because our friend Linda (who is truly an angel on earth, if ever there was one) has been acting as surrogate grandma on Tuesday afternoons ever since Nanny’s school schedule got in the way back in September.  But Nanny was the one who was supposed to cover Thursdays and Fridays, my two big days at the office, and by the end of Tuesday afternoon, I still didn’t know when I’d next be able to go to work.

I was late leaving and worried about detaining Linda.  But the library is in the same building as my office and I suddenly remembered that I had an overdue book to renew (and a small late fine to pay — oops!), plus a book I’d requested had finally arrived.  Since I didn’t know when I’d next be there, I decided to run in and deal with that little bit of business.

As it happened, I ran into an acquaintance of mine whom I have met a number of times at music events in town.  We get along well and had talked about doing some musical collaboration sometime, but had never gotten together to do it.  Since I was in a hurry and she was in conversation with someone else, I just smiled and waved at her and hurried back out the door of the library.

A few seconds later, I heard her call my name.  She wanted to tell me that she’s been writing songs.  We chatted for a minute about her exciting new ideas, then she asked me, “And how are you doing?”  So I told her about the situation with Nanny.

And the she said, “Well, would you like me to come help you out?”

I was so flabbergasted, I couldn’t even say yes right away.

She came over to our house yesterday for a bit of a trial run with the girls and to check out what the keto diet is all about.  Actually, she arrived while I was in the shower with Halia, and when I came out, she and Jade were curled up on the couch together, thick as thieves, and reading The Fox and the Hound.  She picked up on the keto diet stuff right away, asked great questions, and made sharp observations.  She’s worked as a preschool teacher, a driver for the Canada Post (good driver!), a swim instructor (advanced First Aid!)….  In short, I couldn’t have asked for anyone better suited if I had actually gone and placed an order.

I never would have thought of contacting her to ask her to help out.  And I wasn’t even going to go to the library.

Methinks there was someone guiding my footsteps that day.

Jade’s turn

1 Mar

Since Jade started having seizures at the end of May, I searched for (and found) blogs of families who also have children with epilepsy.  A number of them have seen improvements in the children’s seizures, either through finding the right medication or through the ketogenic diet.  I love reading about the kids who get better —  their stories of hope are so inspiring and heart-warming.  But I have to admit that I’ve felt envious, too.  No child deserves to suffer from seizures but reading these stories of recovery would make my heart cry, “When is it Jade’s turn to get better?”

Now, to be fair, Jade is much better than she was in September and October.  If we’d counted every twitch of her body as a separate seizure, as some do, she was easily having hundreds of seizures a day.  She was doped up on drugs, zombified, drooling.  One family described it as “looking at a blank child”, like the child isn’t  even there — that’s what Jade was like.

From the day Jade started the ketogenic diet, she started doing better.  We’ve had ups and downs with her seizure count and energy, but overall we knew the diet was making a difference, that is was working its magic for her.

These past few days, I’ve been on the brink of tears so many times.  And although once I really did burst into tears after fighting with Jade to finish her lunch (she’s discovered the trick of not swallowing — grumble) most of the time, the tears haven’t been from anger or frustration, but tears of relief and gratitude.

We started Jade on her new diet plan (same calories, but more of them from fat) on the night of the 20th.  It’s been barely a week and a half and we’ve seen dramatic improvements.  The last four days we have watched Jade bloom so much, it’s absolutely breathtaking.  She’s been pretending to read to herself, using new words and new word combinations all on her own, playing with other kids, and practically overflowing with energy.  She sang the first two lines of Twinkle, Twinkle Little Star the other day while we were going downtown, and I had to remind myself that letting the tears come out would not be conducive to driving.

And the seizures are way down!  Mornings have long been the worst time of day for seizures.  We try to whisk her out of bed and cram breakfast down her throat as quickly as possible because after fasting for about thirteen hours her body needs fat for energy ASAP.  Yesterday she had one very light body jerk and a bunch of twitches during breakfast, but she had absolutely none the rest of the day.  And today she had none during breakfast.  I’m keeping my fingers crossed that today might be the first seizure-free day for Jade since September.

It looks like it’s finally Jade’s turn to get better.

One of those days

27 Jan

Some days you just want to curl up in a corner and give up on everything. It’s not just me, right?

When I dragged myself up the stairs this morning, Michael, who was just as sleepy as me, asked me if he’d put Jade to bed last night.  I thought back.  Michael had had to work out of the house all day yesterday and then went to band practice in the evening, so suppertime and bedtime were particularly rushed and chaotic.  Nope, I was the one who put Jade to bed.  Turns out I forgot to give Jade her medication last night.

Jade is often zombie-like in the mornings.  She seems to feel the same way we do about being dragged out of bed at 7 a.m. (I know, I know many of you get up much earlier) but this routine of making her get up for breakfast seems to be the main thing that has helped with getting her to sleep at night.  It’s not fun watching her staring — and often drooling — during breakfast.  Jade was particularly unresponsive this morning, especially after a drop seizure slammed her into the spout of her sippy cup, giving her a huge bump just below her right eye.  I was so upset and angry I wanted to slap her and shake her just to MAKE HER WAKE UP.  It’s been a long time since I’ve felt that angry.  But I realized that I was angry with myself; if I could have shaken and slapped myself, I would have.  I was angry about the sheer negligence of missing her medications and I was angry that there’s nothing I can do to just maker her normal again.  This morning I just wanted to cry about how unfair it all is.

Jade’s favourite part of breakfast is generally the fruit.  I often save the fruit for last in order to make sure she gets all her fat into her.  We’re low on fruit at the moment, but I found one pear left at the bottom of the fruit drawer.  I’ve never tried giving her pears since starting the diet because it’s one of the more sugary ones, which means she gets less of it by weight.  I was pleasantly surprised when I weighed it out that it didn’t look like such a small amount, after all (although you would think so, if you saw it).  However, I guess the sandy texture of the Bosc didn’t appeal to her.  She ate one piece and then chewed a second but kept it in her mouth.  Nothing I could do could induce her to swallow it and she was more zombie-like than ever.  I was afraid that if she didn’t swallow it until later she’d get a sugar spike in her system.  So finally I gave up and told her to spit it out.  Funny enough, she complied right away.

And, wouldn’t you know it, she perked right up.  She usually does pick up energy once her breakfast kicks in, but I was so scared about her missed medication that I thought she might spend the whole day in a dazed stupor.  Instead, she’s playing in her toy kitchen, happy as a clam.

Maybe I can carry on, after all.

Wild abandon

24 Jan

In spite of my morning fending off panic attacks, Jade had a pretty good day yesterday, even though she woke up with just trace ketones — yikes!  It was a rough start, but got better from there.

After talking with the dietitian, we all agreed that Jade is probably running out of fat overnight, which causes her ketones to drop.   Starting with supper last night, Jade will be getting an extra 25 calories per meal.  (Her ketones were up this morning — hooray!)

The calorie increase means recalculating all the recipes, but the dietitian has already got a bunch of them done, and besides, it’s worth it to help keep Jade perkier.  We all love perky kids, right?  This is what happens when Jade is perky:

(Here’s the direct link if the above isn’t working.)

Presenting Jade at 35-and-a-half months

20 Jan

I never had any trouble in school when I was growing up.  In fact, I was a classic glasses-wearing, metal-mouth, teacher’s pet, straight-A’s geek.  I remember thinking that since I found school so easy, my hypothetical future kids would, too.  Later on I realized that it was quite possible that I could one day have a child who got average marks, or even — gasp! — a child who was slower than others.  I wondered how I would be able to deal with it.

flipper-jade

Now I have a child who does have trouble learning.  Although she hasn’t been formally assessed, a speech pathologist and a physiotherapist have confirmed that Jade is delayed in both her language skills and her gross motor skills.  I figure she’s behind by up to a year.  And I’ve found it doesn’t bother me a bit.

Well, no, that’s not exactly true.  But it doesn’t bother me the way I feared it might.  I thought that if I had a child who was slow to learn, I would be frustrated with her and I wouldn’t know how to help.  But with Jade, I’ve felt little frustration or blame.  I do wish she could express herself more readily, but only so that I could understand what she’s thinking and feeling.  As for helping her, the speech pathologist recommended vocabulary-building exercises to do while we wait for a formal assessment.  We found that all the exercises she gave us were things we already did intuitively.

gardening

Sometimes, though, her delays really hit home.  My friend Heather has a little boy who is a few months short of his second birthday.  When we go down the street to play with him and his older sister, there’s no denying Jade’s limited speech when we listen to him chattering away at a level far beyond hers.  I don’t feel envious; I just realize how much ground Jade has lost in the eight months we’ve been struggling with her seizures.  I do believe she was a little verbally delayed before the seizures started, but the constant seizures made it very difficult for her to move forward and she kind of got “stuck” at the same level she was at back in May.

Still, she’s making strides in her own time.  This month, we’ve heard her construct her own three- to four-word sentences on her own, something that never happened even just one short month ago.  And we know that she understands what’s going on in her world.  Yesterday, Michael told her that the agenda for the next few minutes were to put on a diaper and change into jammies, and she said, “And then bed?”  A three-word sentence AND demonstrating understanding of future events!

goofy-jade

Sometimes the lack of clarity in Jade’s speech can be endearing.  I can’t help but smile when she raises her cup and says, “Tears!”  (This is one of her favourite moves right now, a legacy of Nai-Nai’s patented “let’s get Jade to drink more” strategy.)  Also, she’s very polite and never forgets to say “‘Ank you!” when someone helps her.  Unless, that is, she says, “‘Anks!” instead.

Sometimes a lack of clarity is just convenient.  “Or turn!” means Jade never has to distinguish between “your turn” and “her turn”, since it works in both cases.

sleepy-girls

One of my favourite new expressions, even though it shouldn’t be, is Jade’s recent habit of firmly and loudly saying, “No,” with her index finger pointing at me and a very serious frown on her face, her dark eyebrows scrunching ominously.  It’s a you’ve-crossed-the-boundaries move that she invokes when I’m doing something like tickling her when she doesn’t want to be tickled.  Or when Nanuq lies down too close to her and dares to breathe on her.  It’s such an obvious imitation of me that I can’t help delighting in it, even if it is somewhat uppity behaviour to be taking from a(n almost) three-year-old.  I’m afraid I am completely encouraging her by giggling every time she does this.  Jade is nothing if not a ham; she loves making us laugh.

jades-popcorn

The ketogenic diet continues to have its ups and downs.  For example, Jade recently decided she no longer cares for drinking whipping cream, which is a staple, so I’ve been trying all sorts of tricks to hide it (like in soup) or change its form to something more palatable (like ice cream).  Happily, she is no longer quite as frantically excited when we tell her it’s snack or mealtime, so the day doesn’t feel like it revolves entirely around food anymore.

Still, you can tell food is an important part of Jade’s world.  When she isn’t at the table for one of her meals, you will very often find her at her play kitchen, making supper.  She loves to bring me a toy plate covered in toy French fries and sausages while I’m working at the computer.  She tells me it’s hot.  She brings me a cup, shoves it in my face and declares, “Or turn!”  Then she gets one for herself and says, “Tears!”  (And I had better play along, or else.)

cooking-jade

Because it’s important to have Jade eat every last bite of her meal, I often feed her some or all of it, even though she’s capable of feeding herself.  It’s not unusual for the last few bites to require coaxing, and I’ve found one good motivator is letting her feed me as a reward.  Tonight, for example, I fed her the last ten bites of her chicken soup and she got to feed me the last few bites of my rice.  Some of those grains of rice must have been loaded onto the spoon at least three times.  She hasn’t yet quite got the hang of keeping the spoon level to keep food from falling off on the way up, up, up to my mouth.

jade-closeup

jades-teeth-35-months

Jade's teeth at 35 months

In somewhat-related news, Jade’s last molars have finally made an appearance.  The last top one broke through about a month ago, and I found half of the last bottom molar showing its crown about two weeks ago now.  I think the worst of the teething is finally over, and I’m not at all sorry to see that phase through.  I can only hope that she will no longer suffer from seizures when we start looking for her adult teeth!

When I have the energy, I can always count on arts and crafts to interest Jade.  Before Christmas, we made paper snowflakes and “stained glass” trees (out of tissue paper).  Jade loved adding globs of glitter glue paint to them, and even after they were up on our windows, she’d ask for them to be taken down so that she could paint them some more.

jade-art

Jade also loves to colour, but she prefers to do that in the company of an adult.  Colouring, for her, usually involves her demanding the adult to draw something, which she might then colour.  “Shish!” she might say declaratively.  Whereupon, you had better draw her a fish, or she’ll stick her face right in yours and repeat “SHISH!” even louder.  Even at three years old, people know that saying things louder makes them easier to understand.

jade-art-2

Another game Jade has enjoyed lately is playing cards.  Michael has taught Jade how to play War.  Sort of.  She doesn’t recognize the numbers, of course, but she loves the act of flipping up her card and then gathering up the winnings into her pile.  Interestingly, when Michael plays this game with Jade, she wins a lot.  Michael swears he’s not cheating.  Here you can see Jade playing her own version of Solitaire.

jade-cards

The best toys, as always, are the impromptu ones found in everyday objects.  Our cat Crook loves to climb into any box that might happen to be around, like this one that contained a new battery for our car.  Jade is also attracted to boxes.  Here she is, giving Crook the ride of his life.  In the next few minutes, she let a teddy bear join in on the ride.  Crook was kind enough to allow the teddy bear to share in the pleasure cruise.

kitty-boat

When all other forms of entertainment fail, we can always count on YouTube.  Jade has a particular affection for Caillou, and even has favourite episodes.  With her evolving language skills, she can now ask for the “apple picking one”, or, more frequently, “‘ISS one!” while poking a grubby freshly-scrubbed finger at the screen.

christmas-morning

In just under two weeks, Jade will be celebrating her third birthday.  There won’t be any cake, but we’ll find a way to mark the occasion.  With all the ups and downs we have had, I feel privileged to have such a beautiful little personality in my life.  And that deserves celebrating.

Buh-bye Keppra!

17 Jan

I’m so excited today!  Michael had a chat with Jade’s neurologist last night and we got the go-ahead to drop the morning dose of Keppra.  We have never liked this drug.  Jade started it late in September.  We knew it probably wouldn’t help, but she was in such a bad state at the time and we weren’t going to be starting the ketogenic diet until November, so it was worth trying in the meantime.  Almost immediately, she started having those awful violent drop seizures that caused her so many facial and head injuries.  We also thought it affected her behaviour.

I believe we mentioned our suspicions to Dr. Huh when we saw her in October for our earlier-than-anticipated start to the diet.  Dr. Huh didn’t want to drop the drug just yet, though, because it’s generally a bad idea to change to many variables at once.  If things get worse (or better), you don’t know what the most likely cause is.

Anyway, today’s the first day Jade got to skip her half pill of Keppra.  And she’s had NO BIG DROP SEIZURES today.  Well, maybe that’s a coincidence.  But she’s also bright and energetic.  Also somewhat emotional at times.  But!  I have great hopes that we’re seeing the last of the drop seizures.  Wheee!

Follow

Get every new post delivered to your Inbox.

Join 76 other followers