We were not alone.

We didn't really know how to ask for it, but when Jade was having her seizures and when we were struggling to beat them, we had a lot of help. It came out of the woodwork.  It came from friends, neighbours, medical professionals, acquaintances, strangers, and other parents who were or still are fighting childhood epilepsy.

Even small things were big things for us. And, still, I don't really know how to express my gratitude to all those who helped us - sometimes before we even realized we needed it.  Even when people couldn't help but wanted to, it was amazing just to know that we were not alone.

It was that kind of support that helped us to achieve an outcome like this, which was recently covered by Dave Croft on CBC North.  The article was shared widely, even making it onto the front page of Yahoo.ca.

And it was this coverage that made it even more clear that WE WERE NOT ALONE.

In response to the article, Fawn has been contacted by numerous parents and guardians who are losing their children to epilepsy. There are far too many.

Fawn was also contacted by Jim Abrahams from the Charlie Foundation.  If you're not dealing with childhood epilepsy, you might be familiar with some of Jim's work. If you are dealing with childhood epilepsy and, in particular, the ketogenic diet, you are undoubtedly familiar with some of Jim's work.

Jim has been telling stories of battling and overcoming childhood epilepsy for a while now. If you haven't seen this Golden Globe-nominated movie he directed (starring Meryl Streep), you really should.



Jim closed his message to Fawn with the following:

"Thank you for sharing your story. I can promise that as a result other kids will get better."

He's right.  Sharing our story helped us, too. Sharing our story helped us to realize that we were not alone.

Thanks, Dave Croft, for helping us to tell our story so other kids can get better, too.

The Tooth Fairy Mystery

The moment the 7am alarm went off in my room there was a knock at the door.  It was Jade.

"The Tooth Fairy didn't come and take my tooth."

Ah, yes, Jade's second tooth.  The tooth we thought would never come out.

The big front tooth that crept across her gums until it was parallel with the floor but hung in there for weeks and weeks until it was finally - and painlessly - dislodged by an apple.  

The tooth the Tooth Fairy kept reminding herself that she had to collect when Jade was asleep because she didn't want another close call like last time when the Tooth Fairy remembered the very first tooth just as she was crawling into bed. The tooth that, in spite of the constant self-reminders, the Tooth Fairy completely forgot about when she crawled exhaustedly into bed after a busy evening of cooking and cleaning and packing lunches for summer camp the next morning because she's single-parenting while her wife is singing on tour in places like Yellowknife and Iqaluit and Ottawa.  That tooth.

"That's weird," I said with a genuinely sad and perplexed look on my face. "Are you sure?"

"Well, the tooth is still there," she said.

"Hmm..." I muttered as I walked off down the hall and she went into the bathroom.

It was then that the Tooth Fairy hurriedly snuck outside wearing nothing but her pyjama bottoms to raid the change tray in the truck for a couple of measly quarters and dimes and then raided the change tray in the minivan for quarters and loonies.  The Tooth Fairy felt horrible for the oversight and wanted to do whatever she could to make amends for her failure to do her job properly. Deftly, the Tooth Fairy snuck back down to her room and inserted the mitt-full of coins under the lowest of her two pillows - one layer below the tooth-bearing pillow sandwich - and exited the room, leaving the tooth behind. 

Strolling back down the hall, with Jade still in the bathroom, I asked, "Are you sure the Tooth Fairy didn't leave anything?"

"I don't think so."

"Did you look under both pillows?" I asked.

We walked into her room together and she checked under the first layer.  The tooth was still there, safely tucked into the giant zip-loc bag where she had placed it.  But under the second pillow? An entire three dollars and twenty cents!

"But why didn't the Tooth Fairy take my tooth?"

"I don't know. I guess it's a mystery."

We've been discussing this mystery all day.  It just doesn't make sense.  Why would the Tooth Fairy leave the tooth behind?

Mysteries are good.  I like mysteries.  Jade likes mysteries.  Little sister Halia likes mysteries, too, judging by the number of possible reasons she's concocted for the oversight.  In the end, Jade concluded that there's only one way to find out and that's to demand an explanation from the Tooth Fairy.  Smart kid.  That's why Jade wrote a note this evening asking the Tooth Fairy why she left the money and didn't take the tooth.

And so, the Tooth Fairy began writing this blog entry, which should take just enough time for Jade to fall fast asleep, at which point the Tooth Fairy will replace Jade's note with a note of her own.  The note will probably blame the oversight on the hired help (one just cannot find good substitute fairies these days) and will thank her for keeping the tooth safe until she could come to collect it herself.  She might even let Jade keep the additional dollar and twenty cents for her troubles.

She might do that. Or she might just take the tooth and let the mystery linger...

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.

Easter Away

I'm away for work this Easter. It's not fun being away from my family and I'm thinking about them a lot. Fortunately, the Easter Bunny came to our house early this year, so we still had our keto-friendly Easter egg hunt.

 I had a great chuckle listening to Jade and one of her kindergarten friends discussing the Easter Bunny and where those eggs come from. Where do those eggs come from? Santa has elves to make all those toys, but what about the Easter Bunny?

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.

Six.

Six years ago, today, my first child was born and my life was changed forever.

   

At the time, I was naive. I had no comprehension of how challenging it would be to be a father. I also had no comprehension of how rewarding it would be.

 Over the past six years, I have seen my child go from a helpless baby to an adventurous toddler, to a helpless toddler, to a remarkably mature and caring kindergartener with a love for learning and a streak of silliness that I adore. She has come so far.
 


Happy Birthday, kiddo!

Christmas with the Kids

It happens every year, but it's different with kids.  We do things we might not otherwise do, like going to see "The Nutcracker".

I took Jade last year and we both really enjoyed it.  This year, Fawn and Halia came along.  We were worried that sitting still through the performance would be too difficult for an active three-year-old girl, but we were wrong.  She watched with rapt attention.

They both liked it so much that they wanted to watch the VHS version as soon as we got home.  It helps that they do an excellent job of it here in Whitehorse.


We also went to a Christmas concert at a local school, where the Grade 1s were playing Fawn's Christmas  song, "Angels Are Smiling".  It was soooooooooooooooooo cute seeing them sing the song (with cue cards to help them along) and they did an excellent job.  Jade and Halia enjoyed the performance, too.



Do they look really grown up in that previous picture?  I thought so, too, so naturally I put them to work.


Just kidding.  They're both playing on their favourite (shhhhh-they're-learning-how-to-read-but-don't-tell-them) website, Starfall.com.  And just to prove that it's not all work, here are some pictures from us at play.


Aww, what a cute kitty!


Bad kitty!  Get out of that banjo case!  (Yes, just in case you were wondering, our cat, Crook, is still alive.)


Our friend, Nita, dropped by with some presents for the girls.  She made one gorgeous quilt for Jade and another gorgeous quilt for Halia.  They love them.  Thanks, Nita!!!


The same night that Nita dropped by with the quilts, we took the girls out for a little bit of Christmas carolling with about 30-40 or our neighbours.  It has become a bit of an annual tradition here, but the first year that we were able to participate.



Right now, the girls are tucked snugly in their beds.  I'm sure it'll be happy mayhem in a half-dozen precious hours.

I hope that your Christmas is filled with happy mayhem, too.  Merry Christmas!

I paca, you paca, we alpaca!

Last weekend, Midnight Sun Alpacas had a "Farm Fair". I was single parenting (Fawn was at Breakout West) and it seemed like it would be a fun activity to do with the girls, so I took them. I'm glad we went!

We were allowed to get up close and personal with the alpacas, who seemed to be as curious about the kids as the kids were about the alpacas.  We were even allowed into the alpaca pens and got to pet some of them.

Some of the alpacas were used for more than their wool.  Like horses, they had little bridles on their faces.  Jade really wanted to visit the one with the reddish bridle.  As you can see, she was very excited...

... but it was the greyish one that really made her laugh with its little, bleating "aaah!"

The roosters were noisy and fun to watch.  They looked big with their pouffy winter feathers, but nowhere near as big as the...


...turkeys!  They were puffing themselves up and coming to visit the girls, putting on a great display.

We all agreed that the turkeys were our favourite.  I don't know why - there's just something about them that's cool!  Maybe it's that weird skin on their head or how they like to strut around all puffy-chested.

Finally, the girls got to go for a carriage ride behind one of the alpacas!  How many people can say they've been pulled by an alpaca?  Check that one off the bucket list!



I'll be keeping my eyes open for this one when they host the Midnight Sun Alpaca Farm Fair again next year - and this time I'll bring some cash to buy one of their nice sweaters!

Climbing with Kids

I have a severe blogging backlog that I will try to address over the coming week. Get ready for a bounty of binge blogging!

First up is a continuation of our trip to Ontario. My family (parents, brother and sister and respective partners and their kids) all went rock climbing at Calabogie.

First up was a short hike, followed by some preparation (getting the ropes ready for climbing, etc.).  The kids were, naturally, excited.









It was Jade's and Halia's first time climbing in a harness. They're natural climbers (as most kids are) but once the harness and rope was on they temporarily forgot how to climb - but not for long!

First up was Halia, belayed by my brother, Tim...






Then Fawn took a turn.  She went up the wall like a bolt of lightning!







Even my Mum tried it, much to our delight.


I belayed Jade for her turn.




She didn't make it to the top, but it was fun while it lasted!  It didn't take her long to get comfortable with the idea of being in a harness.



There are lots of great climbs around Whitehorse.  It makes me want to get a new rope and a couple of kids harnesses and do some family climbing.  I'm putting that on the agenda for next summer!

Earning the bell...

"I want a bell for my bike!" Jade announced.

"After you learn how to ride without training wheels," I replied.

I knew it wouldn't be a simple task.  When I said it, Jade still had some lingering balance issues.  At the time, we weren't 100% certain if the balance issues were because of epilepsy-related complications or chronic inner-ear infections.  Still, her balance was improving and she seemed eager to learn how to ride.

Most of the time, anyway.

We started with training wheels.  I raised the wheels higher and higher and encouraged her to lean from side to side and then try to ride in the middle so the training wheels wouldn't touch the ground.  Most of the time she listed to port like a holed schooner.

"Can I have my bell now?" she would ask.  A big, squeaking frog, it sat there, tantalizingly, on the kitchen table.

"When you ride your bike without training wheels," I reminded her.

Then Fawn bought a Gyrobike Gyrowheel.  The wheel was four times the cost of her bike and when I heard about it, I winced.  The Gyrowheel is a heavily-weighted gyroscope that helps the bike stay upright at low speeds.  The company claimed it would make learning to ride much easier and with fewer falls.  Money down the drain, I figured.  An expensive gimmick, I thought.

 Almost right away, though, Jade started developing good riding technique, understanding how to lean and turn properly.  It all seemed very intuitive to her with the Gyrowheel.  Very quickly, she unlearned all of the bad habits that she had developed with the training wheels.  After a couple of short rides on the Gyrowheel's highest setting, I let go and she was riding on her own.

She stopped almost immediately.  I'd get her going, let go, and she'd stop again.  She kept stopping, only ever riding ten feet at a time.

"Why do you keep stopping?" I asked.

"I want to you hold onto my seat."

I pretended to hold onto her seat, but didn't.  She couldn't tell.  After we had ridden all the way down the street I told her that I wasn't holding on, she was surprised and very impressed with herself.

"Papa, I rode my bike without training wheels.  Can I have my bell now?"

"You're riding without training wheels, but the special wheel is still helping you.  After we don't need the special wheel anymore you can have your bell.  OK?"

"Ok."

In very little time, with the wheel on the highest setting, she went from being a Nervous Nelly who didn't want me to let go of the back of her seat to a giggling maniac, high on the power of riding on her own.  She started making tight turns.  She knew how to stop, but she would aim at the curb or ride for the ditch at full speed - just because she could.  My heart would race and I would pull muscles with sudden lurches forward to save her, but it was all pure hilarity to her!  I began to realize that somewhere inside my quiet, little child lurks a daredevil.  A real, honest-to-goodness daredevil.

After each round of riding, I lowered the power of the gyroscope.  If she ever noticed, she never said so. She just kept riding.

She only fell once, during one of her maniacal daredevil gigglefests.  A few tears were shed, a little sand was wiped off a knee and a hand, and she was on her way again within a minute.

This morning, I turned the Gyrowheel off altogether.  She was riding on her own!

And she got her long-awaited "bell"; that big, squeaking frog that sat tantalizingly on our kitchen table.  Together, we put it on her bike and then she rode off, squeaking her horn as she made her way down the street.

I think we're both pretty proud.

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.

A Happy Father's Day.

Last Saturday, a fellow dad and I loaded our kids onto the sailboat and set sail on Kusawa Lake for an overnight trip.  I was completely unaware that Sunday was Father's Day.  Regardless, with a good steady breeze out of the south carrying us silently most of the way down the lake, and my daughters happy to be out on an adventure, it was a fantastic way spend Father's Day.  Even if I was oblivious to what day it was.

The Neighbourhood Bike Gang

It was too warm for leather jackets.

An Extra-Special Anniversary

Today is an extra-special day. To the best of our knowledge, for exactly one year, Jade has been seizure-free.

In the immortal words of Kermit the Frog...

Everything changes.

I have been burning the candle and both ends and in the middle lately, frantically trying to complete some contracts before their due dates. Yesterday afternoon, however, I closed the ol' laptop to take in some much needed family time.

We went to the hotsprings where, with the assistance of her floaty suit and a little bit of encouragement, Jade discovered that she could make her way around the pool on her own steam. Her smile was huge as she pedaled with her feet all around the pool.

It hasn't been easy getting Jade to feel more comfortable and confident in the water. Normally, she clings to me and freaks out if I try to get her to swim on her own. You see, it wasn't that long ago that swimming was a very risky activity for us.

Jade used to have atonic, myoclonic, and absence seizures. One moment, she could be swimming along happily, and the next, she'd have a seizure and be face-down in the water. Unnerving. And Dangerous.

Now her seizures are under control and we've been able to let go of a little bit of that fear. In fact, the hotsprings were downright fun. It was wonderful to see her regaining that confidence - one little paddle on the way towards learning how to swim.

Really, there are a lot of things that we've started taking for granted again. We can let her play on the playground equipment without having to hold her around the middle in case she has a seizure. We know that she's able to learn and develop without constantly being interrupted by seizures. We can sleep at night without worrying about her having seizures. Oh, we still get woken up at all hours, but seizures aren't the reason.

We're lucky.  This summer she'll be on her bike and, hopefully, she'll learn how to ride without training wheels. That would have been nearly inconceivable just over a year ago.

She is doing very, very well.

_______________

I got a message from a friend the other night. He was up very late. His daughter had just been diagnosed with Generalized Absence Epilepsy. They're a very active family. Swimming, riding bikes, playing at the playground, and everything else they've known just became a lot more complicated and a lot more dangerous. Nothing is normal anymore.

I'm sad for them because I understand what they're going through. If they can't get her seizures under control, their lives will dramatically change.

I also know how much epilepsy can steal from a family. (Please read that last link.)

________________

Epilepsy is more common than autism, multiple sclerosis and Parkinson's disease combined. You know a lot more people with epilepsy than you realize.  What you may not know is how it has affected their lives.

March is Epilepsy Awareness Month in Canada and I'd like to ask a favour of you.  If you know someone with epilepsy, ask them about it.  Ask them how it has affected their life.

If you don't know someone with epilepsy (and trust me, with more than 1 in every 100 people having some type of seizure disorder, you do), visit epilepsy.com or wikipedia and learn a little more about seizure disorders.  Then, share it on facebook, twitter, your blog, or wherever. 

Please, post in the comments section what you've learned.

It's time we started paying more attention to epilepsy - and finding ways to put an end to seizure disorders.

Jade's First Poem

Jade just wrote a poem.

Seriously.

OK, so maybe she didn't write it - she's only four and three-quarter-years-old - but she did compose it. Jade's helper asked her some questions and copied down what Jade composed. And here it is:

Snow

I like it falling down

Snowflakes are twirling around

I see cars...

I see snow on the cars

I see stairs...

I see stairs covered in snow, too

I see signs...

I see snow under the signs

I see trees...

I see trees covered in snow, too

Snowflakes are still falling down and twirling around

Everything is covered in snow now!

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.