June 26, 2009

Whitehorse to Ottawa: A Ketogenic Diet Travelogue

Speeding down Mississauga's Eglington Avenue like a race car driver, my mind scurried as I tried to think of the best way to explain to a police officer why finding a jar of Hellman's mayonnaise within the next ten minutes constituted a medical emergency.

But I'm getting ahead of myself. I should begin by explaining what this entry is about: It's about traveling with a child who is on the ketogenic diet. If you don't know what the ketogenic diet is, I suggest you read this link and especially this link before continuing.

A Reason to Travel
As many an immigrant knows, moving somewhere new means leaving friends and family behind. When I "immigrated" to the North, I left family in Ottawa. Sometimes, my family has come to visit me. On other occasions, it has been incumbent on me to visit them.

Although they've tried, my parents have not been able to visit us since the summer of 2006. My Granny is in a care facility in Toronto and my mother has had to stay close to help attend to matters.

If you've been a long-term reader of Michael's Meanderings, you might remember my Granny. When she and my Pop came to Whitehorse, two years ago, we discovered that she had a brain tumour. It was likely caused by a lifetime of smoking; a small spot of lung cancer that metastasized into an aggressive brain tumour. Since then, she's undergone radiation, brain surgery, and I don't know what else.

Today, she is bed-ridden, barely able to speak, and can barely lift her arms. Her mind, however, is intact. When we first discovered that she had the tumour, she told me that a slow, painful death was her worst nightmare. It's important for her family to be near to make things a little more bearable.

Because of the situation, my parents and siblings still hadn't met now-seven-month-old Halia. Neither had my Granny. I figured it was about time they did and, if you can't bring Mohammed to the mountain, you bring the mountain to Mohammed (or whichever way that's supposed to go).

We weren't necessarily looking forward to traveling because of the challenges that come along with the ketogenic diet, but you do what you've gotta do...

Preparing to Travel
Fawn spent hours preparing enough meals for the two-day trip, as well as some extra meals, just in case we had trouble finding keto-friendly supplies in Ottawa. The diet is very strict and brand substitutions are not an option unless a new recipe is created and approved in the "keto-calculator". Each recipe is created for a specific individual, with a specific number of calories, and a strict ratio of fat to protein to carbohydrates, and, short of skipping an occasional meal, there is no flexibility. Eating a meal that's not in proportion can cause Jade to fall out of ketosis, possibly undoing all of the gains we've made trying to get rid of her seizures.

With our luggage, two children's car seats, the portable cooler full of pre-measured keto-meals, and a carryon suitcase packed with keto-recipes and the large scientific scale that we use for preparing Jade's meals, we boarded the Air North flight from Whitehorse to Vancouver.

Cooler Craziness  - Flying from Whitehorse to Ottawa
We could have made the trip from Whitehorse to Ottawa in one day, but intentionally booked our flights so it would take two. We wanted to break things up so it would be more manageable. Also, we wanted to have a visit - however brief - with Fawn's sister and brother-in-law.

The flight to Vancouver, as usual, was a good one. Good ol' Air North is always happy to store Jade's food-packed cooler in one of the cabinets at the front of the plane.

On our WestJet flights to Ottawa (via Toronto), there were a couple of hiccups. The first was when they didn't do a pre-boarding call, making all of the parents with small children try to herd their children through an already-full airplane, bopping the other passengers on the heads with their diaper bags and coolers full of keto-meals.

The second hiccup was the hight of the cooler - or the shortness of the WestJet seats, depending on how you want to look at it. The plane to Toronto didn't have any cabinets where we could store the cooler, so it had to go with us to our seat. Unfortunately, the WestJet seats are about an inch too short for the cooler.  

The flight attendants wanted us to tip the cooler on its side and store it in the overhead bins, but we couldn't do that because the more-liquidy meals could leak. Fortunately, they were understanding about it all and allowed us to keep the cooler on the floor as long as it was against the wall of the plane and Jade got the window seat - that way we could keep the way clear if we needed to evacuate our seats in a hurry. The flight attendants informed us that this was the last time we'd be able to do that.

After a quick stopover in Toronto, we boarded the plane for our flight to Ottawa. We had the same little hiccup with the cooler. Fortunately, they allowed us to use the same seating arrangement as last time, but informed us that it was the last time that we'd be able to do that.

Visiting Family
In Ottawa, my Mum managed to hold back her tears at the airport, but turned into a blubbery mess when we got back to her house. She was happy. It was her first time seeing Jade since before Jade's seizures started, and it was her first time meeting her newest granddaughter, Halia. She would turn into a happy, blubbering mess again and again over the next few days. While that in itself would make the whole trip worthwhile, there was someone else we wanted to visit, too - my Granny.

Visiting my Granny in Toronto would entail a drive from Ottawa to Toronto on what must be the most boring yet (ironically) stressful highway in Canada. I'm not sure why we decided to drive to Toronto after having landed there just days before.  Had I known how close the care home was to the airport, I would have planned things differently.

For our trip, we booked a hotel room close to the care home. Then, we prepared more keto-meals: I worked on some and Fawn worked on others. We packed and loaded the car and drove to The Big Stink.

I was bored to tears for most of the drive and hated the traffic (one of the many reasons why I live in the North), but we got there safe and sound.

Normally, a trip to Toronto would be no big deal, but we were worried. The night before we left, Jade came down with a deep, throaty, cough. She had handled the three-hour time zone change well and the disruption in her sleep pattern didn't result in a noticeably large increase in her seizures, but we were concerned about what a cold would do. For a child with epilepsy (and who is on the ketogenic diet), even a common cold can bring with it all sorts of other problems - increased siezure activity being one of them.

Because the diet is so strict, we have to be very careful about carbohydrates. Antibiotics, Tylenol, and just about every medication you can think of - have carbohydrates in them. We have a list of medications that she's allowed to have and in what proportions, but it's still unnerving. Outside of the specialists, very few doctors know that the ketogenic diet even exists, let alone how it works (and its restrictions).  Our keto-team had given us a contact in Ottawa if we should need help, but we didn't know who - if anyone - we could get in touch with in Toronto.

After checking in at the hotel, we had a short visit with my Granny. We were tired and it was time to get the kids to bed. Back in the hotel room, I started feeding Jade, who was coughing, overtired, and squirrelly.

"Give her some of the mayonnaise," Fawn said. I had prepared the meal that I was feeding to Jade and I didn't recall weighing any mayo for it.

"There's mayo in this recipe?" I asked, incredulously, having prepared it myself.

Fawn assured me that there was and I looked at the recipe card in disbelief, seeing that there was, indeed, supposed to be 10g of mayonnaise. The implications of my error hit me like a tonne of bricks hitting a banana. If I couldn't keep Jade's meal in proportion, she would be thrown out of ketosis. She needed to stay in ketosis.

I thanked the heavens that we had decided to bring her scale (which we had almost opted to leave behind), but cursed myself because we didn't have any mayonnaise to weigh into the meal.

Knowing that urgent action needed to be taken, I rushed out of the door in search of some Hellmann's mayonnaise. I had about twenty minutes to find some.

The area where we were staying wasn't exactly a residential area, which meant that a grocery store was not likely to be in close proximity. I asked the agent at the hotel's front desk, but the directions that he gave me were wrong (yes, I followed them correctly). I started with a couple of convenience stores, but they had nothing. I also struck out at a couple of delis and a sub shop. The delis had mayo, but they didn't know what brand. They must have thought I was a sales rep from Hellman's because I kept insisting that it had to be Hellman's.

Time was quickly running out. One of the convenience store clerks gave me directions to a grocery store, but his accent was so thick I couldn't understand him even when he spelled the name of the street he was telling me to turn right onto. Only half-listening because I didn't want to be rude but really didn't have time to ask for clarification, I thanked him and sped off in that general direction that he told me to go.

It was at this time that I realised I was driving aggressively above the speed limit. I tried to think of the best way to explain to a police officer - if I got pulled over - why it was a medical emergency for me to buy some Hellmans mayonnaise and get it back to my hotel room within the next ten minutes. Maybe my story would be so ludicrous that he would arrest me on the spot. I prayed that my story would be so convincing that he would turn on the lights and siren and guide me to the nearest grocery store and back.

I sped toward another intersection and what the convenience store clerk had told me clicked. I hung a right, having no clue where I was supposed to go next. Fortunately, after a few blocks, the grocery store came into view.

I ran in, bought the mayonnaise, and dashed back out.

Keeping Things in Proportion (and Perspective)
Back at the hotel, Fawn had recalculated Jade's meal and discovered that it could still be served in proportion (albeit with fewer calories) if she removed some of the meat and carrots from the meal.

When I arrived, Jade had just finished her half-meal. Not wanting to deprive her of any calories, I weighed out the 10g of mayo and served it to her.

Jade took a bite.  Then, she threw up.  She kept throwing up until everything she had eaten came out. I caught most of it in my hand. I caught the rest of it in one of her food containers.

I cleaned up and checked to see if she had a fever. She did and she was coughing even harder than before.

I thought, "This trip sucks."

Fawn and I put her to bed and, after nearly hacking out a lung, Jade fell asleep. Later, we gave her a keto-approved suppository which we had brought with us to help quell her fever. Normally, she fights suppositories but, short of a little whine, did not resist this time.  She must have been feeling awful.

I thought, "She's really sick. Why the heck did we come here?"

I asked the question, but already knew the answer, really. We came to see my Granny for what would likely be the last time.

Morning Breaks and So Does the Fever
Jade was a little better the next morning. Her fever had broken. She didn't want breakfast so we decided to skip it. A small fast had the potential to help deepen her ketosis, which would be good for fighting the seizures that might want to increase as a result of her cold and fever.

It was hard to say good-bye to my Granny, but I was glad that she had met her great-grandkids.  It was hard to see her suffering, but it was still good to see her.  I was glad that we had done the drive.

Jade and Halia slept most of the way back.

The cream is different in Ontario
I've already mentioned that brand is important when it comes to the ketogenic diet.  Unfortunately, the recipe for one brand in Ontario isn't necessarily the same recipe for the same brand in another province or territory.

Take cream, for example.  In the Yukon, 35% Beatrice Cream is made from cream and carrageenan.   In Ontario, the same brand is made from the same stuff, but with a dozen more things added, including sweeteners that would totally mess-up Jade's diet.  None of the other half-dozen brands were any better.

You would think that cream - actual cream made without sweeteners - should be easy to find in a big place like Ottawa, but it isn't.  In the end, I was able to track it down in a non-vegan natural food store, but only after a couple of liters of the keto-unfriendly stuff had been purchased and nearly a week into our visit.

The Next Stop
It was time to bid farewell to my parents and siblings.  There were more tears and more hugs, and we boarded the plane for Vancouver.  Again, there would be a stopover, but this time it was for an EEG and an appointment with Jade's epileptologist.  

To prepare, we had done the same routine as we had on the way out, with Fawn preparing enough of Jade's meals for our stay in Vancouver and for the flight back to Whitehorse.

After our arrival in Vancouver, I saw Fawn and the kids off in a taxi while I went back into the airport to catch a flight to Whitehorse because I was due in Dawson City the next day to play at the Commissioner's Ball.

While I was gone, they did fun things like go to a petting zoo.  Unfortunately, while they were out and about, Fawn noticed that one of the strawberries in Jade's meal had gone moldy.  Just like having too many carbohydrates in a meal isn't a good thing, suddenly increasing the ratio of a meal by not having enough carbohydrates can be hard on Jade's system.  Also, mold isn't very nice to eat (says a guy who's speaking from experience).  Somehow, Fawn and Jade managed - but always having to worry that much about meals and all the things that can go wrong (spills, improper measurements, inconsistent brand recipes, mold, etc.) can be stressful.  Suddenly having to deal with a KME (Keto-Meal Emergency) can take all of the fun out of traveling. 

The EEG and the Ketogenic Diet
The next day, when I was back in Vancouver and reunited with Fawn and the kids, Jade had a back-end explosion that required deep scrubbing in several rooms and made us ten minutes late for her EEG.  We wondered if it was the strawberries or if she had picked up something else on our travels.

It was Fawn's first time seeing one of Jade's EEGs.  I wandered the hospital grounds with an overtired (and too loud to be in the EEG room) Halia while we waited.

The bad news was that Jade is showing signs of having tonic seizures, which can indicate a poor prognosis for the future.  The good news is that isn't necessarily always the case and she may have been having them all along (just not when she had an EEG).  The great news is that there has been a significant improvement in her EEG results overall and the epileptologist was quite pleased. 

As much trouble as it is, and as many problems as there are (and can be), the diet is still better than the drugs we had her on.  Best of all - best of all - IT'S WORKING!


Jennybell said...

I'm trying to get my husband, Bill, to go to North Carolina, an 8 hour trip, while he's off the 1st week of July. He's nervous about traveling and this post wouldn't make him feel any better! :)
Naomi is completely off meds and the seizures are no worse, and way better than when we started the diet. Her stupid molars are just about finished coming in! 2 yr molars and she's almost 3yr and 4 months! the molars have been a major set back! Hopefully they'll come in and we'll be able to really start seeing improvement every day. She's been teeting since the first week of Dec!!!!!!!!
Oh and the boring hwy to Toronto- when we go to Niagra Falls there is a stretch we have to drive that I swear has NOTHING to look at! Like it's a barren plain or something!

Meandering Michael said...

Oh! I forgot to mention that we bought a new cooler for the trip back. Jennybell, as painful and nerve-wracking as it was at times, it was still worth it.

It's amazing that she's still teething! I'm looking forward to getting Jade off her last drug. In hindsight, I really think they made things a lot worse.

Lindsay said...

Sorry it was so rough. But your nieces and nephew were happy to meet their cousins and see their Aunt and Uncle.

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