Kissing Ketosis Goodbye?

Around that time that Jade's seizures were at their worst, I wrote this entry on Finding Strength.  (Go ahead and read it.  This post will be waiting for you when you get back.)

That was a little over five years ago.  Five long years and just a little before we started Jade on the ketogenic diet.  Thank goodness we were able to find the strength to get us through the storms because the good times have arrived!

Long-time readers of Michael's Meanderings will know that we achieved seizure-freedom for Jade a few years ago and last September she had a squeaky-clean EEG.  We owe so much to the ketogenic diet and to the team at BC Children's Hospital who helped us to administer it - but gosh darn it the diet is a pain in the butt (still better than the seizures, though) and after so many years of having to kowtow to the diet's demands, we dreamed of a day when we would be free to prepare a meal without having to weigh every ingredient to the tenth of a gram, or plan our every waking moment around Jade's snacks and meals and supplements.

Well, I am pleased to report that the day has come.  Actually, it has been several weeks now, but it takes a while to do the wean off the diet and I didn't want to jinx anything.  Jade is out of ketosis and appears to be thriving.

Here she is, being allowed to eat as much protein as she wants for the first time in five years.

I'm tickled by how much she enjoys being able to eat new foods and by how much she enjoys eating as much of it as she wants.  She has so much more energy! She's growing (She's very short compared to her classmates: A "side effect" of the diet)!  I'm also tickled that we don't have to use the scale anymore! She can eat when she's hungry and isn't constantly begging for food! We don't have to prepare multiple meals at supper! We don't have to lug her meals around with us or prepare them in advance!  Oh, the freedom!

So much freedom, thats we're going to Disneyland! I kid you not!  While possible on the ketogenic diet, the logistics of traveling from Whitehorse to Disneyland while administering the diet sounded as reasonable as packing the car for a weekend trip to Mars.

Now, we're not out of the woods yet.  Yes, she's off the diet.  Yes, she appears to be doing well, but that doesn't mean there aren't things going on in that noodle of hers that we can't see.  We'll be going back to BC Kids in February for another EEG and, hopefully, everything will look great.  If not, well, we'll cross that bridge when we come to it.  For now, we'll revel in the glow of what feels like a fairy tale ending and hope that there's no sequel.

Jade: 5 Years on the Ketogenic Diet

In May of 2008, when she was about 2-and-a-half years old, my eldest daughter, Jade, started having seizures.  About a month later, she was diagnosed with Myoclonic Astatic Epilepsy.  Medications didn't stop the seizures and by October she was having hundreds - if not thousands - of seizures every day.  We had to use emergency anti-convulsant medications almost daily.  Our previously-bright and cheerful daughter had become a shell.  We were losing her.

At the end of October, Jade was inducted on the ketogenic diet at BC Children's Hospital.  We noticed an improvement immediately, but her seizures persisted.  The following March, we had to make an emergency trip to Vancouver because she relapsed.  We weaned her off the anti-convulsant medications shortly after that and aggressively increased her fat to protein and carbohydrate ratio until her body couldn't take it any more (twice going to a 5:1 ratio, but on a 4.75:1 ratio most of the time).  

It worked. 

About a year ago, one of the doctors said Jade "had" epilepsy, which is not to be confused with "has" epilepsy.  We were stunned and thrilled and the slow process of reducing the ratio and weaning Jade off the ketogenic diet began.  Of course, reducing the dosage of her "medication" has risks, because it could mean the return of her seizures.

Last August, Jade and I were back at BC Kids for her latest EEG.  It came back squeaky clean.

Jade is now on a 2:1 ratio, which will be reduced again today.  The doctor expects she'll be out of ketosis and off the diet by February.  We're watching her closely, but in my very core I know she'll be OK.

Jade accepts the diet in stride - and even seems to be proud of it - but I'd be lying if I said the diet is easy.  I think it's often made out to be harder than it really is - and it is, truly, a pain in the butt at times - but it saved our daughter.  Jade, who was once reduced to a drooling, twitching shell, with vacant eyes and an uncertain and frightening future, is now a bright, happy, and personable 7-year-old who loves school, drawing, singing, and reading.  She's always got her nose in a book these days.  Her eyes gleam with mischief, adventure, and love.  

And we couldn't be happier.

Spontaneous Human Combustion and the Whitehorse Ketogenic Connection

There are at least three kids in Whitehorse using the ketogenic diet to control intractable epilepsy.  One of them is mine.

Because Jade has been on the diet for almost four years now (during which time we have successfully managed to eliminate her seizures. YAY!), I haven't done much research on the diet as of late.  It's old hat.  Recently, however, someone posted an article from NewScientist about a researcher who theorized (and tested) that spontaneous human combustion is caused by a dangerous build-up of acetone in the body - Acetone produced through ketosis.  (Go ahead and watch the video.  It's two-and-a-half minutes long.  If you want a longer one, here's the full hour-long video on youtube.)

After reading the article I thought, Good heavens!  Is my child at risk of spontaneous combustion?

While she was, for a time, on a remarkable 5:1 ratio (the diet is normally administered at a 3.5:1 or 4:1 ratio), and the ketone bodies could be clearly smelled on her breath, and the ratio was so high it was negatively-affecting her other organs, she never burst into flames - thank goodness.  She is now on a 4:1 ratio and we're hoping that, after her next appointment at BC Children's Hospital, she'll be reduced to a 3.5:1 ratio.  The good news is that people who have spontaneously combusted were incredibly ill and possibly in a deep, deep state of ketoacidosis, therefore, the likelihood of my daughter spontaneously combusting is, fortunately, unlikely. Not good news those poor, sick people combusted, of course, but good news that Jade is unlikely to combust spontaneously.

But it did get me on wikipedia looking up ketosis.  Until now, I'd only bothered looking up "ketogenic diet".  It turns out that there's some controversy around being in ketosis and what's preferred by the human body: burning carbohydrates (glucose) or burning fats.

Here's an except from the ketosis controversy section on Wikipedia:

Some clinicians regard restricting a diet from all carbohydrates as unhealthy and dangerous. However, it isn't necessary to completely eliminate all carbohydrates from the diet in order to achieve a state of ketosis. Other clinicians regard ketosis as a safe biochemical process that occurs during the fat-burning state. [...]  The anti-ketosis conclusions have been challenged by a number of doctors and advocates of low-carbohydrate diets, who dispute assertions that the body has a preference for glucose and that there are dangers associated with ketosis.

Now, that's not a huge surprise to me.  In our increasingly polarized diet world, I see people taking positions on "carbs good/fats bad"and "fats good/carbs bad" all the time. What did surprise me was the attention that the Wikipedia article gave to Arctic explorers and "hunter-gatherer" societies.

Because of the experience of Arctic explorers like Vilhjalmur Stefansson who adopted native Inuit diets which derived as much as 90% of energy from fats and proteins, many have held up the Inuit people as an example of a culture that has lived for thousands of years on a ketogenic diet. Conversely, it is speculated by Nick Lane that the Inuit may have a genetic predisposition allowing them to eat a ketogenic diet and remain healthy. According to this view, such an evolutionary adaptation would have been caused by environmental stresses. This speculation is unsupported, however, in light of the many arctic explorers including John Rae, Fridtjof Nansen, and Frederick Schwatka all of whom adapted to native ketogenic diets with no adverse effects. Note especially Schwatka, who specifically commented that after a 2- to 3-week period of adaptation to the ketogenic diet of the native peoples he could manage "prolonged sledge journeys, "including the longest sledge journey on record, relying solely on the Inuit diet without difficulty. Furthermore, in a comprehensive review of the anthropological and nutritional evidence collected on 229 hunter-gatherer societies it was found that, "Most (73%) of the worldwide hunter-gatherer societies derived >50% (≥56–65% of energy) of their subsistence from animal foods, whereas only 14% of these societies derived >50% (≥56–65% of energy) of their subsistence from gathered plant foods," suggesting that the ability to thrive on ketogenic diets is widespread and not limited to any particular genetic predisposition. While it is believed that carbohydrate intake after exercise is the most effective way of replacing depleted glycogen stores, studies have shown that, after a period of 2–4 weeks of adaptation, physical endurance (as opposed to physical intensity) is unaffected by ketosis, as long as the diet contains high amounts of fat. It seems appropriate that some clinicians have acknowledged this period of keto-adaptation the "Schwatka Imperative" after the explorer who first identified the transition period from glucose-adaptation to keto-adaptation.

Wow.  This Schwatka guy had a lot to say about being in ketosis, eh? He even has a period of keto-adaptation named after him!

Wait a minute... Schwatka... Schwatka... that names sounds familiar...

In Whitehorse, we have a small lake called Schwatka Lake.  There's even a tour boat called the MV Schwatka that starts and ends on the lake and travels through scenic Miles Canyon.

Picture of the MV Schwatka in Miles Canyon, lifted without asking for the kind permission of  visitwhitehorse.com

Schwatka Lake was named after Frederick Schwatka, a US Army Leutenant sent to assess the military strength of the native peoples along the Yukon River in 1883.  Along the way, he named just about everything he saw - ignoring, of course, that everything along the way already had a name.  (What's up with that?) Many of the Yukon's most distinguished landmarks bear Schwatka's names today, including Miles Canyon (pictured above).

If you're interested in learning more about Schwatka, here's an article by ever-impressive local historian, Michael Gates.

So the whole point of the blog entry is that I thought it was neat that there's an historic Whitehorse connection to the ketogenic diet that I never knew existed before.  Perhaps you don't think it's as interesting as I, and if you made it this far into the entry, than I apologize and only hope that you thought the spontaneous human combustion part was interesting because, seriously, people just... catching fire all of a sudden?  Wow.  Crazy.  But true.

Heck, yeah!!!

I've got an update on Jade. It has been a while since I've written about our battle with epilepsy, mostly because things have been going well. Quite well. Fawn and Jade just got back from Vancouver and we have some news to report. You can read Fawn's report here.

A Jade Status Update: EEG Confirmation

We're in Vancouver right now for a variety of reasons. One of those reasons was for Jade. It has been a while since her last EEG.

I remember her first EEG well. It was like a little stab at my heart every time I saw the EEG spike. Every spike was a seizure and she was having a lot of seizures. Many of them weren't visible on the outside, but they were happening. My heart got stabbed a lot during that EEG.

The ketogenic diet (and improvements that came with drug weaning and constant tweaking of the diet - including an unbelievable and intolerable couple of rounds at 5:1) has been nothing short of a miracle for Jade. It has been over a year since we witnessed her last seizure, but the worries about the subclinical seizures - the ones we see no evidence of on the outside - remained.

Two days ago, we hooked Jade up for a 24-hour ambulatory EEG.

Yesterday we got the results.

While there is still some minor "slowing" in the background, this is not uncommon for a child with Myoclonic Astatic Epilepsy. The big news was that there were absolutely no spikes. None. She's not having any seizures. Her EEG was remarkable for its normal-ness.

Jade's doctor was thrilled, the keto team was thrilled, and we're thrilled.

Jade has been on a 4.75 ratio for about a year-and-a-half. Based on the excellent results, we'll be reducing her ratio to 4.5. It's the first step in weaning her off the diet. Then, we'll travel to Vancouver in another six months for another EEG to see how things are going with the wean.

All through this experience, I've had what can best be described as a pessimistic optimism - hoping in my heart of hearts that it will work out, but knowing that the worst can happen and mentally preparing for it - but this time I know it's going to work. I can feel it.

When this picture was taken, two years ago...

It was two years ago when I took this picture.  At the time, Fawn didn't want me posting it to the blog.  I didn't put up too much of a fight.  Now, we're ready to share it.


Before you get the impression that we physically abused our child, let me give you some context.

When this picture was taken, two years ago, Jade was having hundreds of seizures in a day.  Earlier that day, Jade had had an atonic seizure (also known as a "drop seizure") onto the paved walkway leading to her aunt's house.  Actually, she'd had a couple.  She would have about a dozen drop seizure in a day (in addition to her other seizures).  In spite of the padded helmet, she always managed to land on her face.

When this picture was taken, two years ago, Jade was eating her last meal before starting the ketogenic diet.

If you aren't familiar with it, the ketogenic diet, is a high fat, adequate protein, and extremely low carbohydrate diet.  Under certain circumstances, it is used to treat cases of intractable epilepsy.
 It is extremely strict and it takes a cursed lot of work, time, and attention.  Everything is measured to a tenth of a gram and must be eaten in the designated fat-to-protein-to-carbohydrate proportion.  There is no wiggle room and it is not an "all-natural diet"; there are side effects.

After having failed several medications, Fawn and I were losing hope.  We were scared to have hope for the ketogenic diet.  What if it were to fail?  The diet doesn't always work.  If it didn't work for Jade, then what would we do?  When even the experts aren't sure why it works, how much hope can you have that it will?

When this picture was taken, two years ago, Fawn (who was pregnant with Halia) went to the hospital for painful kidney stones.  The next morning, Jade and I went to the BC Children's Hospital for her induction.


Almost immediately, during the fasting stage of the diet, we saw a brightness return to Jade's eyes.  Fawn, meanwhile, was doped up on morphine.

But the diet was working!  Things weren't perfect, of course. We saw regression more than once - including one time that required an emergency visit to the Children's Hospital in Vancouver - but we had our daughter back. And that was amazing.



They don't know how the diet works - and it doesn't work for everyone - but for those who have seen it work, there's no wonder in my mind why they call it the "miracle diet".

It has been two years now since we started the ketogenic diet.  Jade is healthy and happy and smart and amazing.  From time-to-time we catch ourselves cursing how much work it is to maintain the diet, but I cannot ever forget how deeply grateful I am for the diet that saved our daughter.

It has been two years now since we started the ketogenic diet and, oh, how things have changed since then.

A wake up call.

She woke around six this morning, screaming that she was hungry. This is not the kind of thing a kid on the ketogenic diet should be complaining about.

I didn't notice. I was dead to the world. Another kid screaming again? When in a sleepy state, I have developed the power to ignore anything beyond the realm of my bed-sheets. From within the sheets, however, I am completely vulnerable. Fawn's hand thrust out and jabbed me in the side. The meaning of the gesture was clear.

In a bleary-eyed state, I stumbled down the hall to Jade's bedroom. With any luck I would be able to bring her back to our bed and coax her back to sleep. Instead, I was subject to an hour of restless four-year-old feet launching themselves with force into my man-parts.

I thought, how very different things are this morning compared to this very same morning two years ago when Jade had her first seizure.

And how far we've all come since then! Jade's not seizure-free - she still has the occasional but very brief jerks in her sleep - but it's a remarkable improvement over how bad things had gotten. We're not out of the woods yet; there are other complications that we need to deal with, but her balance and coordination is improving incredibly quickly and her language skills, which had been markedly delayed, are still leaping ahead.

The whole thing has been hard on us, but now we're living our lives again. The epilepsy anchor is always there, but doesn't weigh us down quite like it used to.

Fawn wrote and recorded this song about a year ago.



I think Jade said it best this morning, as she was eating her breakfast when I told her that she started having seizures on this very morning two years ago. She nodded. looked at me reassuringly, and said, "I had broken wings, but I don't now. I have new arms. Flap! Flap!"

Coconut Milk: Code Red Security Threat

We were already alarmingly close to our departure time. Jade hung around, quietly, waiting patiently for the airport security folks to open and swab everything in all of our bags. After explaining that Jade was on a medical diet for the fourth time to the third person, I, on the other hand, was losing my patience.

After being asked for the fifth time, I clenched my teeth and explained again: "She's on a medical diet. She has epilepsy. It's a high-fat diet called the ketogenic diet. We use it to control her seizures. Everything she eats needs to be precisely measured. I have a doctor's letter. Would you like to see the letter?"

Once again, nobody cared to see the letter. They had bags to tear into.

As one woman pulled apart a bag, yanking out vitamins and pill crushers and the electronic scale, she grilled me on the contents and their purpose. Another man peered intently at an image of the cooler filled with chilled, pre-measured keto meals on his x-ray machine monitor. A third security person was waving a can of coconut milk he had taken from my bag, asking me for the fifth time why it was part of Jade's medical diet. He stared at it like it was the most dangerous object in the world and called his supervisor over to ask if he should confiscate it.

I should have felt honoured to have had three security people taking such an interest in the contents of our baggage. Knowing how seriously they take their jobs should have provided me, and everyone else in the rapidly-lengthening line behind me feelings of safety and comfort. Instead, I had a frustrated scowl on my face. As did everyone else in the line on the other side of the metal detector. Terrorists posing as dads with four-year-old girls on medical diets must be more common than I realized.

Finally, after they had been through all of my bags, the woman finally asked me for the letter. Finally satisfied, she gave me the all-clear. I scrambled to pack everything back together and realized I hadn't been given back the can of coconut milk. I put my hand out toward the man who was still holding the can, using the international gesture of "give it to me now". The man looked at the can again, perhaps weighing in his mind the potential damage that could be caused by such an item. After another glance at his boss, he reluctantly handed it to me. A can of coconut milk isn't an expensive thing but I had already decided that I wasn't going to leave without it.

Luckily, we made it to our gate on time, but the look on the airport security guy's face caused me to wonder, what could possibly be so dangerous about a can of coconut milk? Was he afraid that I would somehow turn the coconut milk into an explosive device? Because that would take some serious MacGuver-like skills. Was he afraid that I would somehow get ahold of a can opener and turn the lid and base of the can into throwing stars, using them to hijack the plane? Maybe he suspected that I was a MacGuyver-like ninja. Who knows?

What I do know for sure is that I'm glad that I brought that can of coconut milk home. Fawn went shopping for coconut milk two days ago and it would appear that the particular brand we use for Jade's diet momentarily disappeared from the shelves in Whitehorse.

We would have been hooped without it.

Aroy-D Coconut Milk - Preferred by ninja terrorists with MacGuyver-like skills posing as dads with four-year-old girls on medical diets.

Paging Dr. Wilson?

I'm in Vancouver with Jade. We've come down for her regular visit to BC Kids. There was no EEG this time. Her epileptologist says she's stable and is pleased at how far she's come and how she's developing. We'll do some more tweaking to the diet but she says we won't need to come down again for six months.

Notwithstanding the progress made on the epilepsy front, a new area of concern has emerged. It's normal for kids on the ketogenic diet to get a fatty liver, but Jade's liver enzymes are high even for a kid on the diet. Playing it safe, our epileptologist referred us to a renal gastrointestinal specialist.

The day that we flew into town, Jade and I went straight to the hospital for some bloodwork. The GI specialist had Jade's blood testing for a slew of different things. One of the tests came back abnormal. It was a test for Wilson's Disease. The test alone doesn't mean that Jade has Wilson's Disease - a recessive genetic condition where the body cannot properly process excess copper, so it builds up in the neurological system, eyes, and liver and causes neurological problems (including seizures) and liver problems.

The bad news is that, if Jade has Wilson's Disease, it's something she'll have to live with for her entire life. The good news is that it's treatable and, (I hope) if we treat it properly, maybe it'll get rid of her seizures completely. It could be one of those "bad news" things that's actually a "good news" thing.

But it's a very, very, very remote chance that she has Wilson's Disease. People with the disease usually develop copper rings in their eyes (but you'd need specialized optometry equipment to see them). We had Jade's eyes tested while we were here and she doesn't have those rings. In fact, the optometrist said that her eyes are all-round perfect.

There are a number of other things beyond the DNA marker and the eyes that must be tested for a formal Wilson's Disease diagnosis. The "gold standard" is a liver biopsy. We're not even close to going there yet, though. We still have other - less invasive - tests to do first. Like lots of urine testing.

Just an aside to say that I wonder about these people who have diseases named after them. Do they take it as a compliment or does it pain them to have their name associated with a disease? That their name will be forever associated with something that afflicts people in a negative way.

"Dude! Your nose is running! You might have Meandering Michael's Disease. You should get that checked out."

My Cyborg Child

We were in Vancouver last week for a series of hospital appointments.

Over the Christmas holidays, we knew there was something wrong with Jade. She wasn't eating well (even by ketogenic diet standards), she was throwing up, she was sometimes lethargic, very whiny, pale, and her lips would turn a strange, deep blue colour.

Bloodwork revealed that her liver was failing.

Acting fast, the keto team decided we should take some stress off her liver. The ketogenic diet is hard on the liver as it is, so we reduced her fat ratio from 5:1 to 4:1. That's a huge drop. 4:1 is where we started. That night, heard her have a seizure. It was the first one we'd heard in a wonderfully long time.

Near-daily draws of blood showed that the change was working. Her liver was improving, but we were worried. She was definitely having seizures on the 4:1 ratio. Could we go back to 5:1? Would we be forced to choose between her liver and her brain?

With Jade's epilepsy, seizures can mean cognitive impairment. But what good is having good cognitive functions if you don't have a liver to keep things going?

Our first appointment in Vancouver was for an abdominal ultrasound (after having more blood drawn). Over-tired from the travel, Jade screamed through most of it. I don't think she liked the way it tickled her sides.

The next day, we hooked her up for her first-ever ambulatory EEG. Before the liver stuff, we were thrilled that she was having a 24-hour EEG. With her typical EEG appointment, they require sleep deprivation, which makes seizures more likely to happen (Odd that we would try to trigger seizures when what we really want to do is prevent them from happening, eh?). With the 24-hour ambulatory EEG, we were hoping to see what Jade's brain would be like under more normal circumstances. Unfortunately, down on the 4:1 ratio, we weren't going to get to see that after all. Still, the ambulatory EEG would be enlightening.

As with any EEG, it all starts off with a head measuring and marking, the application of adhesive and conductive paste, a little bit of tape here and there, and a fancy little net to keep it all from getting knocked off.

Wired.

The ambulatory EEG uses a self-contained battery-powered unit that fits conveniently into a child-sized backpack. Although it was disconcerting to sign the form saying that I take full responsibility (financial and otherwise) for the $16,000 unit, it was heartwarming to see how well Jade liked wearing the purple backpack. For most of the day, she was Dora the Explorer.

Dora, the cyborg explorer.

Some watermelon for her latest adventure.

Jade was great about not messing with the attachments and making sure that her heavy little backpack stayed near enough that the wires didn't get tugged out. The next day, we were back at the hospital to get the whole thing removed. With the seemingly non-stop Vancouver rain, keeping everything dry was a bit of a challenge, but we succeeded.

"It's wet out there!"

The solvent to remove the goop smelled and, in spite of our efforts, a little bit got into Jade's eye. Fortunately, she recovered quickly and before long she was disconnected, shampooed, dried, and ready to go.

Being disconnected.

Scrub, scrub, scrub!

The day after that was our appointment with the keto team. Although we didn't speak about it much, I think it's safe to say that Fawn and I were both preparing for disappointment.

The look on the epileptologist's face didn't belie any disappointment, though! She seemed thrilled with the progress. Her liver? We'll take blood every week and monitor. When things are back to normal (as normal as they get for the ketogenic diet, anyway), Jade will go back onto the 5:1 ratio. They suspect it was a virus. Another keto kid had the same problem around the same time. They're going to do ultrasounds of the keto kids more often, just to get a baseline of what's "normal" for a child on the ketogenic diet. Jade's liver was "fatty", which is to be expected of someone on a high fat diet. Also, the ultrasound showed no sign of kidney stones or the sludge that would indicate the growth of kidney stones (a typical side-effect of the ketogenic diet).

Her EEG results? Absolutely no seizures during the day, subclinical (hidden) or otherwise. None whatsoever. She had only two during the nighttime. None during her nap.

What does it all amount to? We had one setback, but have made many, many steps forward.

And we're going to keep moving that way.

Cyborgs and telepaths.

We're in Vancouver where Jade is doing a 24-hour ambulatory EEG. She's got wires protruding out of her head, monitoring her brain activity. If it wasn't for such a crappy reason (epilepsy) it would be very, very cool. She looks like a cyborg! (Yes, yes, I'll post pictures later.)

I'm not going to write much about the whole experience because Fawn has suddenly developed telepathic abilities and has actually read my mind, written out my thoughts, and posted them to her blog before I ever got the chance. You can read what she wrote here.

It will get better.

Last year, about this time, things were not good. Not good at all.

Jade was having constant seizures and Fawn and I were at the end of our ropes - and near the end of our hopes. We were exhausted, eating poorly, and always on-guard. What hope we had was because of the ketogenic diet. We would soon be taking Jade to Vancouver to get her on the diet.

The night before the Jade's induction, a very pregnant Fawn woke up with intense abdominal pain. It was so bad that I had to call an ambulance, but couldn't follow her to the hospital. I needed to stay with Jade.

Lying awake on that couch, feeling absolutely exhausted but completely unable to sleep, waiting for a call from the hospital, wondering if my wife and unborn child were going to be alright, and wondering if my first child would ever be more than a constantly-seizing, heavily-medicated shell, was the absolute lowest point in my entire life. I wondered how things could possibly get worse, knowing deep in my heart that they could.

But I never gave up. Fawn never gave up. Jade never gave up.

With a lot of work, teamwork, research, determination, winging-it, trial and error, hope, and support from family, friends, and strangers alike, things got better.

In fact, we've come a long, long way since last year.

No, things aren't perfect. Jade's still having small seizures that disrupt her sleep, but we're working on getting rid of those, too. But dietary restrictions and some language delays aside, you'd think that she's just like any other almost-four-year-old. Halia's happy, healthy, and walking. Fawn and I are still married. We're eating better. We're spending more time together. In spite of Halia's best efforts, we're sleeping better. We're happier.  Things are much, much better.

The lesson? No matter how bad it gets (and it can get awfully bad) if you refuse to give up, it will get better. It will get better.

It will get better.

Looking forward to the day when my child becomes a cyborg.

I was in Vancouver for two weeks, mostly for work-related activities. Near the end of my stay, Fawn flew down with Jade and Halia. Upon seeing them again, I marveled at how much kids can change in such a short amount of time. My jaw was constantly dropping because of the things that Jade was saying and the things she could do. After all the drug- and seizure-induced delays, we're really seeing progress now.

Halia, too, is as good as walking. She still chooses to scootch on her butt over long distances, but she's perfectly capable of doing it as a biped.

Fawn and the girls came down because it was, once again, time for Jade to get an EEG. We wanted to know: Will the EEG show any progress? Are the ongoing challenges and tribulations of the ketogenic diet worth it? Has removing her allergens improved the situation?

We sleep-deprived her and did the test.

Afterwards, we met with the epileptologist who told us the results. When she was sleeping, Jade's EEG showed that she's still having seizures and that the seizures are disrupting her sleep, effectively waking her up. Being woken up shortly after you fall asleep is not a good thing. We have more work to do.

On the bright side, Jade's EEG also showed that she had NO seizures during the waking portion of the test. None. Zero. Zippo.

Overall, it's a major improvement.

WOOHOO!!!

Now, we're weaning her off of the last of her medications, will likely do another ratio increase, find a substitute for her supplements (which contain an allergen), and will remove any newly discovered allergens once we get the expanded allergy test results.

In three months, we'll go back to BC Kids, but this time Jade won't have a short, sleep-deprivation EEG. Instead, we'll hook her up for eighteen hours wand let her sleep, eat (keto food), play, and live life like any normal kid with a dozen wires attached to her head.

She'll look like some kind of crazy discount-store cyborg and I, for one, am looking forward to it.

Vive la progrès!

The Golden Horseshoe

While Fawn and Halia are off at a family reunion in Germany, Jade and I decided we would take a little trip of our own.

The plan was to go to Kluane National Park, find a few good places to camp, and do a few day hikes into the park. I loaded the van full of camping gear and an electric cooler full of keto-meals for Jade and we were on our way.

Jade travels well, and seems to enjoy long drives - especially when she gets to watch Sesame Street and Caillou DVDs on the van's DVD player.

Curious, I turned off of the Alaska Highway and onto the road to Champagne. Halfway down the road, I pulled off and into a meadow for Jade's lunch. The smell of sage and sun-baked grass was gorgeous. For the first time in a couple of days, I was smelling something other than dirty diapers and woodsmoke from distant forest fires. After Jade's lunch, we went for a walk, but quickly returned to the van when I got a whiff of rotting animal. Nanuq tried to warn me about it before, but I wasn't paying close enough attention. I suspect it was a large animal that had been cached by a bear.

We didn't stay long in Champagne, but it was neat. It's a place with a looooong history and a few famous residents. It's also a place with a lot of old log buildings and hubcaps.

Champagne.

Lotsa hubcaps.

Jade, not wanting her picture taken with the hubcaps.

After Champagne, we drove to Haines where we collected some intel from the Parks Canada staff on which hiking routes would best meet our needs.

Dezadeah Lake and the mountains of Kluane National Park.

That night, we camped right along the water at Dezadeash Lake in the Territorial Park. The wind did a great job of keeping the bugs away. It also did a great job of keeping the other campers away from our site. One of the campers was surprised that I would set up my tent in such a windy spot, but I knew what I was doing. Later, when the wind dropped, they were swatting bugs while Jade and I were sitting pretty.

Actually, Jade was doing anything but sitting. The lake was calling to her, as it was also calling to Nanuq. Neither could resist, so we went down to the shore where Nanuq and Jade engaged in their mutually favorite activity.

Getting ready for the throw...

Really ready for the throw...

Lift-off!

Oooh! That's not a rock!

A game they both enjoy.

They could have done it for hours had Jade not discovered that swimming in the lake was even more fun. I was amazed at how warm the water was and even though I was concerned that she would soon become hypothermic, Jade did not want to get out of the water.

With the bright sunlight, long, hot days, and sweltering tent, it was difficult to get Jade to go to sleep. I was grateful when, sometime after 22:00, the sun went behind a mountain and gave the tent a chance to cool off.

She was up by 5:00 the next morning.

Packed up and heading south from the campground, I stopped to read a road-side sign and found out why the water in Dezadeash Lake is so warm. Dezadeash, unlike many of the Yukon's lakes, is actually quite shallow, giving the water a chance to warm up. The next time we go to Dezadeash, I'll be sure to bring my swim suit.

The plan for day two was to go hiking up to a small, mountain lake, just south of Dezadeash Lake. After less than a kilometre, we decided to change our plans and head back to the van. The morning air was calm the wet air from a passing rain shower the night before had brought out all the mosquitoes. It was too hot to wear bug jackets, especially while I was hauling Jade on my back, so Jade put herself to work as the designated bug-squisher and I put myself to work as the speedy packhorse. If it had just been me, I would have pushed on, but the last thing I wanted was an over-tired, bug-bitten child screaming and suffering ten kilometres into our hike.

Instead, I decided that we would drive down to Haines, Alaska. Luckily, I had packed our passports!

Where we didn't go hiking.

Another place where we didn't go hiking.Wow, that's a lot of smoke in the air.

We weren't in any kind of hurry and made frequent stops along the way to investigate interesting sites and to give Jade her scheduled keto-meals and snacks. The cooler seemed to be working well, even if it confined us to the van, somewhat.

One of our stops was at Million Dollar Falls Territorial Park. Jade bolted down the boardwalk, navigating the stairs like they were the easiest thing in the world. I still get a little nervous about Jade around stairs, but she hasn't had a seizure while she's been awake for a while now, and her balance seems to be quite excellent. She's now standing on one foot for four and five seconds at a time. It used to be that she couldn't stand on two feet without stumbling.

I tried to snap a few pictures of the falls while keeping an eye on her, hoping that she wouldn't try to climb the railing. I have often made fun of my Mum for not letting us get anywhere near the edge of the Grand Canyon. Granted, I was eight years old at the time, but that doesn't mean I had any more sense than a three-year-old. Now, I think I understand where she was coming from.

Million Dollar Falls.

Jade, not wanting to have her picture taken at Million Dollar Falls.

Whitewater.

Jade running up and down the stairs - the reason why I didn't take more pictures at the Million Dollar Falls.

The falls were nice, but Jade was far more interested in the playground. It's sad to think that we drove all that way, spending so much time on a little play structure when there were so many other great places to explore (and dozens of larger, better play structures back in Whitehorse), but I, fortunately, realized that the trip wasn't just about my need to explore. The trip was about spending time with my daughter, so we spent lots and lots of time on the play structure.

Jade loves playgrounds.

After finally managing to pry her away from the playground, we continued our drive down the Haines Highway, stopping at a pullout at Tatshenshini-Alsek Park, where we started a hike up a creek bed and ended up walking up a few bluffs. It's definitely an area that deserves more exploration.

Good hiking in Tatshenshini-Alsek Park.

Hiking up the creek bed.

The Nunavut bloggers no doubt see a lot more of this than I do.

River-sculpted clay.

Morew artsy clay.

Alluvial fan.

A plant I have yet to identify.

The perfect place for a sunny afternoon nap.

Summer ice.

Very hike-worthy.

Mountain glacier.

More good hiking.

Nanuq enjoys chasing the ground squirrels.

Gotta return.

Bigger than it looks.

There weren't any mosquitoes around, but there were a lot of biting flies. Fortunately, Jade resumed her role as the official bug-swatter. Unfortunately, she was swatting the bugs on my neck with a couple of rocks that she had asked me to collect from the creek. I have to admit, though, as much as it hurt, she was very good at her job.

Me and Jade. Note the rock in Jade's hand, which she was using to bash flies off my shoulder.

More mountain vistas.

Returning to the car, we were surprised by a couple of distraught bird families. The babies flew off in all directions while their mothers pretended to have broken wings, luring us away from the little ones. Nanuq was excellent, heeling when told to do so and leaving the brave birds alone.

Eat me, not my babies!

Eat us, not our babies!!!

Back in the van, we reached the summit and began the long descent to Haines. The views were stunning. I was so caught up in the scenery, I didn't even thing to stop and take pictures. Jade even looked away from her episode of Blues Clues to look at the mountains.

Near the summit on the highway to Haines.

It's hard to watch the road with all these great views! The really amazing view came soon afterwards. No pictures, though. Sorry!

Jade fell asleep just before we pulled into Haines, giving me a chance to find out the schedule for the ferry to Skagway. I had decided that we would go to Skagway that night instead of spending more time in Haines. One of Jade's keto-meals had leaked and I wasn't sure which one. I was able to narrow it down, but the meals I had to rule out left us a day short.

After I bought the ferry tickets, we had a great time. Of course, given the opportunity, Jade and Nanuq resumed their favourite past-time.

In Haines, the game begins anew.

Ready, aim...

...fire!

And so, the game continues...

Pounce!!!

Old pilings.

Harbourfront Haines.

The Lynn Canal.

Salty dog.

Sunbathing by the seashore.

Haines.

Jade makes good use of the beach.

I ordered a pizza and after I ate some, we drove out to a lookout at the nearby Alaska State Park where I fed Jade her supper while we sat on a picnic table, enjoying the view of a distant glacier on the opposite shore.

The ferry sailed late and it was now well past Jade's bedtime. I was worried about what it might do to her seizures, but I didn't have any choice, short of driving back home in the direction we had come. She did very well in spite of the late hour. Ever the social kid, she hobnobbed with the bikers on the Ride Yukon tour and the Alaska Marine Highway System staff.

The trip from Haines to Skagway goes by fast, especially when there are cruise ships to see, giant, cascading waterfalls, and whales to spot.

Aboard the Malaspina, with a big ol' cruise ship ahead.

Now that's a big boat.

Waterfalls.

All aboard!

When we got into Skagway, it was late. I drove part way out of town and found a place to park the van. By now, Jade was exhausted and I wasn't sure that I'd have quite enough gas to get back to Whitehorse. Collapsing the seats and rearranging our gear, I was able to carve out a comfortable sleeping space for us inside the van. Snuggled into my side, Jade fell asleep with a little smile on her face. So did I.

The next day, after a stop at the Carcross Desert, we made it home just in time for Jade's nap. The trip didn't go as planned and we had to cut it short. It was not without its frustrations, but it didn't matter because one little thing made the whole trip worthwhile - trumping even the fantastic scenery of the Golden Horseshoe: that contented little smile.