Tag Archives: ketogenic diet

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!

A day in the life of the keto diet

10 Dec

I’ve had a number of questions about just how Jade’s diet works on a day-to-day basis, so here it is in a nutshell to satisfy your curiosity!

Basically, Jade’s food is her medicine now (although she is also still on three drugs, too).  Her body is fuelled almost exclusively by fat, which is good.  Burning fat (being in “ketosis”) is what keeps the seizures down.  Since she hardly has any fat on her body, Jade needs to get her food very regularly or her energy crashes.  (Plus, her body would then start burning muscle tissue, which is unhealthy and would also cause her ketones to drop, which would impact seizure control.)  With me so far?

Right now Jade eats her “breakfast” at around 7:30 a.m. (and breakfast is in quotes because it’s in a bottle because she’s generally still in bed then), a snack around 10:00 a.m., lunch at noon, afternoon snack around 3:00 p.m., and supper at 6:00 p.m.

Each of Jade’s meals and snacks is very specifically calculated to maintain her weight and allow for just a little bit of growth.  She gets 272 calories per meal (plus or minus 4 calories, depending on the recipe) and 75 calories per snack.  90% of her calories come from fat, usually in the form of butter, oil, mayonnaise, or whipping cream.  Since the calculations are so precise, we use a spatula at the end of each meal to ensure Jade gets every last drop of cream or butter or whatever.

breadHere’s the meal Jade had for lunch today.  This is low-carb almond bread with butter and cheese, served with whipping cream mixed with oil and a little water as a drink.  (She also gets “keto-koolaid” as a drink, but the cream and oil make up the balance of the fat she had “budgeted” for this meal.)  I was very happy to get a bread recipe because she missed bread a lot. The main ingredients are almond flour (which is nothing but blanched ground-up almonds), eggs, and cream cheese.  It’s extremely crumbly when done, and even with such low carbs, Jade can still have only a sliver the size of my finger.  Once baked, my mom spent a couple of hours painstakingly packaging small pieces into “Press ‘n’ Seal” packages for the freezer.  I created this bread and cheese recipe because she kept asking for cheese.  As you can see, the recipe is pretty heavy on butter!

I have access to an online tool called the “Ketocalculator”, which I use to create new recipes for Jade.  It gives me the guidelines set out by our dietician and automatically calculates calories and nutritional values for me.  We have to stick to specific brands for many products since nutritional values vary by brand.

Here’s what one of Jade’s favourite meals looks like as a recipe:

Tuna and Fruit

  • 34 g Fruit 6 (usually raspberries)
  • 16.5 g Tuna (Cloverleaf, chunk light)
  • 5.5 g Butter
  • 28 g Hellmann’s Real Mayonnaise

And here’s what it looks like made up.  (We’re out of raspberries at the moment, so I substituted applesauce, but that is a “Fruit 9″, so she gets 23.5 g of that instead of 34 g.)

tuna

As for finding ingredients, we’ve been pretty okay with that.  We can’t find 4% cottage cheese or any kind of creme fraiche, unfortunately, and we’ve had some adventures with whipping cream.  (Did you know that whipping cream comes in three different levels of fat?  There’s 33%, 35%, and 36% and we’d have to recalculate any meals using whipping cream if we were to substitute a different fat level cream.)  I had to get Jenny to send me the Bickford flavours so that we can now put “maple syrup” (maple-flavoured butter) on her pancakes (made almost entirely of whipped egg whites).  And Janet helped us locate keto-friendly Kool-Aid and coconut oil in Whitehorse.  Besides that, shopping for diet ingredients hasn’t been too bad.

We are kind of dependent on power since the scale works only when plugged in.  The last couple of power outages made us kind of nervous.  Fortunately, we found these cute and cheap scales at Lee Valley; they run on batteries and while they may not be as accurate as our big scale (though we can’t tell a difference, to be honest) they will do in a pinch!

The cooking hasn’t been the hardest part of the diet.  The hardest part has been psychological and emotional.  And a bit logistical, too.  But I’ll save all that for another day…

Up the wall

8 Dec

Jade’s doing really well on her diet.  She’s now been on it for six weeks and we’re starting to see a little more consistent seizure control.  I actually have half a post written up about Jade and her diet.  I hope to finish sometime this year.  But today I just wanted to post about a little surprise.

We’ve been a bit concerned about Jade’s weight lately.  She’s by no means overweight, of course.  She’s always been on the dainty side, apparently having gotten Michael’s fast metabolism.  She hadn’t gained any weight, though, since her seizures started in May.  That was one concern.  Then, after she dropped a bunch of weight at the beginning of the diet (not uncommon, especially since she hardly ate at the start) she started gaining weight and actually surpassed the plateau where she’d previously been stuck.  That’s a concern because kids on the ketogenic diet aren’t really supposed to put on any weight.  They may put on some if they grow, of course, but they tend not to grow a lot because of the nutritional restrictions.  Generally, weight gain means they’re getting too many calories, something the dietician watches out for, since 90% of the calories come from fat.

I finally remembered to measure her height, today.  There’s a wall where we keep track of her growth, with pencil marks dating back to early 2007.  The last time we’d measured her was October 13.  We tried to measure her again a week or two after we got back from the diet initiation, but Jade wouldn’t hold still and Michael gave up when his marker showed she’d shrunk — ha!  Well, today she stayed still enough to get a good measurement, and she’s grown more than a centimetre!  She went from 93.3 cm to 94.7 cm, and I think most of it happened last month.  So perhaps that explains some of the weight gain.  Whew!

Vitamins

25 Nov

One of the most difficult aspects of Jade’s ketogenic diet has been her vitamins.  The food she eats is not varied enough to supply her with all the nutrients she needs, so having the right supplements is essential for her long-term health.

Michael and the dietician decided to try out a specially-made supplement called “Phlexy-Vits”; they figured it would be the easiest option because it’s all-in-one.  The trouble is, it tastes absolutely awful.  The first time she was to take it, I mixed the powder into the cream for her evening meal.  I gave it a taste.  It tasted like the cream had gone sour.  I dumped out the cream.

We’ve tried all sorts of ways to mask the taste.  Sweetening it with stevia.  Adding mint.  Adding extra water to dilute it.  The best way was to make it into a paste (as compact as possible) and sweetening it, but even still it was a struggle every day, with lots of tears from Jade, and heartache for us.

The alternative is to use vitamins available from the drug store, but it means giving her three different pills and an effervescent tablet.  Three more pills!

One of them, though, are Bugs Bunny “Complete” vitamins.  Since Jade was eating (and enjoying) chewable vitamins before she started the diet, I figured she just might go for these.  We tried it for the first time today.

When I told her it was time for her vitamins, Jade said, “No!”  Emphatically.  I showed her the Bugs Bunny vitamin.  She stared at it, then quickly plucked it from my fingers and popped it into her mouth.  Then she asked for more.

I gave her the calcium-magnesium tablet next.  These are not chewables, so I tried one.  It didn’t have much of a flavour, but was sort of sour in the middle.  I gave Jade hers.  She chewed it up with no complaints.  Then she got the Caltrate tablet and she did the same thing.  I’d have thought that she’d spit out the non-chewable vitamins because they don’t taste very good, but I guess after the awfulness of the Phlexy-Vits, she doesn’t mind.

Why didn’t we try this sooner?

Good things today

3 Nov

We started off a bit inauspiciously with the daily fight over taking medications, and a face-smashing-into-the-floor drop seizure just as I was getting the helmet ready, but things have improved from there.

  • Fewer seizures
  • Good ketones
  • A snack that went smoothly for once.  (Hurray!  I love this new recipe, and you would, too.  Whipping cream with unsweetened Baker’s chocolate and coconut oil melted into a “hot chocolate”, sweetened with stevia, and with raspberries on the side.)
  • Ordered a case of KetoCal (had to get a consent form from the dietician and she responded first thing this morning).
  • Ordered a bunch of special food flavourings from Bickford, who make their products for bakers and candy-makers, but they know all about the ketogenic diet; I couldn’t order online because their website is set up for U.S. only, but the woman on the phone was fabulous.  Phew, no having to send stuff to an American friend to ship on to us!
  • My friend Janet (a different one who doesn’t blog) sent me a message on Facebook that she’s flying into Whitehorse from Saskatoon tonight and asked if I needed anything.  I asked her if she could find liquid Stevia and liquid Sugar Twin and she’s picking up both at their local Wal-Mart!
  • Nugget is still safe and sound in utero, but his/her head is waaaaay down and fully engaged and s/he could arrive any time now!  (We hit 38 weeks on Friday.)
  • And best of all… my Mom is arriving at 1:30 this afternoon!  I really need my Mom right now and I’m SO excited that she’s just a couple of hours away.  YAY!

UPDATED TO ADD: And lunch went well, too!  She didn’t want to eat her last bit of salami (chewed it up and then spat it out) but by bribing her with the allowed raspberries, she finally ate everything up.  We’re living one meal at a time…

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...

Jade and Halloween

25 Oct

We’ll be home from Vancouver on Friday, just in time to celebrate Halloween!  Yesterday I hit the Dollar Store and picked up some goodies, which I will be distributing to the neighbours along with this note:

Greetings!

As you know, Jade has been having seizures since the end of May.  In the last month, the neurology team in Vancouver has concluded that she is not responding to anti-seizure drugs; since she has now “failed” three drugs, the chances of any other drug working for her are very slim (less than 10%).

This week, we are travelling to Vancouver again to start Jade on a special therapy called the Ketogenic Diet.  This diet has a very good chance of helping her to control her seizures, so we are excited to give it a try, but it does mean some big changes to what she eats.

One of the big changes is that she will not be able to have any sugar, which of course means no Halloween candy.  We think she can still enjoy the fun of Halloween, though!  When we come to your door, we’d love it if you could give her the enclosed non-candy treat.  (We’re sure you won’t have any trouble recognizing us, even though she’ll be arriving as a lion.)

We’ll be leaving on Sunday morning and will be back on Friday afternoon, just in time to take part in Halloween.  Hope you have a great week!

Thanks in advance for your help!

Fawn, Michael, Jade, and “Nugget”

Here are some shots of Jade discovering her costume for the first time a few weeks ago.  (Thanks to Tim for most of these pictures.)  Click on the photos to enlarge them.

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!

Vancouver and back

12 Oct

Since my last post, I have been to Vancouver and back again.  The trip was quite a whirlwind.  We found out about two weeks ago that the epileptologist at BC Kids (a pediatric neurologist who specializes in epilepsy) would be able to squeeze us in for a visit this past Friday.  She wanted both Michael and me to be there, since we were going to discuss the possibility of doing the ketogenic diet.  In some ways, it was meant as an orientation for us, and in some ways it was an opportunity for her to assess whether we’d be a good fit for the dramatic lifestyle change that goes along with the diet.

Yukon Health usually will pay for just one parent to travel with a child as a “companion” for medical appointments Outside (i.e. anywhere not in the Yukon).  However, they will cover the cost of both parents travelling if it is deemed medically necessary.  I was on pins and needles waiting to find out whether they would agree that it was medically necessary for us both to be there, and thank goodness they did.

The three of us left on Thursday morning, and so theoretically had a whole day of “free time” in Vancouver.  But we’d been up since about 5 a.m. because Jade had had a series of seizures that required emergency medication.  This was the fourth morning in a row that we had to use her rescue meds, so we were physically and emotionally spent by the time we arrived in Vancouver, got to our lodgings, and had lunch.  It was definitely time for a nap.  We did get to see my sister for supper that night, which was wonderful; the last time I’d seen her was at her wedding in Mexico last year.

Jade’s new neurologist, Dr. Huh, is great.  I arrived at the appointment clutching a notebook filled with little coloured tabs; I had a tonne of questions and I didn’t want to forget any of them.  The doctor chuckled when she saw the notebook and she said she knew she liked us already.  We spent a bit of time talking about the history of Jade’s case and then she spent a bit of time examining her.

I’ve never gotten to see Jade at her previous neurology appointments, so it was fun watching Dr. Huh interacting with Jade, seeing how she used different kinds of toys for her tests.  We already knew that Jade is right-handed, but didn’t realize just how strong her preference is until we watched the doctor doing some of her tests.  When it came to testing for reflexes, she took out her little hammer-thing (wonder what it’s officially called?) and told Jade, “This is my booper!”  Every time she’d hit a spot on Jade’s body, she’d say, “Boop!”  Jade was fascinated, and I was highly amused.  When she looked into Jade’s ears, she said she was looking for puppies in there; tell me you’d keep a straight face at that line.

Jade had a number of seizures while we in Dr. Huh’s office; in fact, Dr. Huh observed more seizures than we did, which was both surprising and a little distressing, given that we think we’ve gotten pretty good at watching for them.  She also observed a slight tremor in Jade’s hands and a slight lack of balance, probably from fatigue and the number of seizures she was having.  (She’d had another series of early-morning seizures, although this time they hadn’t required the rescue meds.  But they really tired her out.)

Based on the last EEG, our recent observations of Jade’s seizures, and her examination that morning, Dr. Huh concluded that Jade’s anti-seizure medications really aren’t working.  Since Jade has now failed three medications (Clobazam, Valproic Acid, and Clonazapam) there’s a less than 10% chance that any other anti-seizure medication will work.  The longer the seizures go uncontrolled, the worse it looks for Jade’s development.  We’ve already had confirmation that she is slightly speech-delayed (though we believe that started even before the seizures; the more seizures she has, the harder it becomes for her to catch up.  Given her age, her type of epilepsy (Myoclonic Astatic Epilepsy, we were told for the first time), and the fact that we’re pretty proactive and organized parents, it seems Jade is an excellent candidate for the ketogenic diet.  We were told that Jade’s type of case is one they want to treat aggressively because right now she functions at a good cognitive level, so she really has something to lose.

BC Kids has a special kitchen for training parents who have a child starting the ketogenic diet.  Besides the doctor, a nutritionist and a nurse are dedicated to the program.  It is such an intensive use of resources, they can only start two kids on the diet every month.  I am really grateful that they told us they can probably fit her in toward at the end of November.  I expect that Nugget will have arrived by then, and although it means I’ll miss a week of my mom’s visit (boo!) as far as we’re all concerned, the sooner Jade can start the diet, the better.

In the meantime, despite the low probability of success, Jade is starting a new drug called Keppra.  This is the anti-seizure drug they usually try first at most US hospitals; we’ll see if it does anything for Jade.  I expect we’ll see at least a short-term improvement; maybe that will tide us over until we can get her started on the diet.

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