The Hassle of Keto

Monday, I offered my assessment of the financial cost of the ketogenic diet. Today, I want to explore a much bigger consideration: the hassle.

I can find olive oil in most places, but I can't go anywhere without a gram scale.

I can find olive oil in most places, but I can't go anywhere without a gram scale.

It's important to note where I'm coming from here. Collin uses a g-tube to eat, so palatability is not a huge issue for us. His diet is blended from whole foods and is dairy free, grain free, and soy free.

So, let's start off by calling it like it is: the ketogenic diet isn't easy. Here's why.

1. The food. Every meal and every snack on the ketogenic diet has to be precisely calculated and then precisely measured. There is very, very little leeway.

2. The time. All food takes time to prepare, I get that. But the calculating and the measuring involved in this diet really adds up. Then there's the matter of time windows. Meals need to be completed within a certain amount of time so that the body metabolizes the food in its proper ratio. Meals and snacks also need to be spread out over a proper amount of time to keep blood ketones level.

3. The complications. Various blood and urine levels have to be checked regularly to make sure the diet isn't having any adverse effects. You need special IV fluids when you're in the hospital. Managing illness on the ketogenic diet is one of the more complex things I've ever tackled. The list goes on.

4. The lack of flexibility. For us, there is no Hey, let's change our plans and stay out longer. If Collin's food isn't with us, we have to go home. Twice in his entire life, we have extended a trip, and then only because I had packed a gram scale and so could cobble something together without a Vitamix. 

But. But. But. 

The hassle is 100% worth it. And it's our normal. We rarely think about the hassle and, when we do, we realize that we have the far better side of this tradeoff. 

The Cost of Keto

Today is International Epilepsy Day. Collin was first diagnosed with Infantile Spasms, a catastrophic seizure disorder, on June 23, 2009. He was four months old. 

Collin's seizures have been completely under control for over five years now, which is something that still makes me shake my head in wonder. Even more amazing is that he hasn't taken a single anti-epileptic drug in those five-plus years. His medicine is food

Last year, Collin and I had the chance to speak to a group of physicians at a conference about the ketogenic diet, giving insight into how we implement it in our daily lives. One of the questions has stood out in my mind over the months:

What is the financial cost of the ketogenic diet? 

It's an issue that hadn't entered my mind because Collin's seizures were so bad that I was willing to do and pay anything to stop them. But I think it is important to address the financial side of this treatment. As parents consider completely overhauling their child's diet, it's natural to wonder if they will also need to overhaul their budget.

Here is my answer, based on very little science but lots of experience. It's important to note that my assessment is based on a whole foods ketogenic diet. Some kiddos use Ketocal formula, and that's a different monster, depending on health insurance and even location. 

The foods needed for the ketogenic diet are on the expensive side as far as groceries go: oils, creams, proteins. However, the diet calls for children to eat a reduced number of calories, so quantities are smaller than typical portions. Also, Collin can eat no processed foods, which cuts down on costs further. 

Some supplements make the ketogenic diet more pleasant and/or effective. Because of the high fat content in his food, Collin gets very little natural fiber, so he needs a fiber supplement. It is also difficult to get enough protein for a growing kid on the diet and studies have shown that adding amino acids can make the diet more effective, so Collin takes a complete amino acid powder. Together, high quality fiber and protein powders cost about $25 a month. Insurance does not cover these supplements, though they do cover carnitine, which most keto kids take to help with fat metabolism.

In short, the ketogenic diet may be marginally more expensive than a conventional diet. Compared to the benefits of gaining seizure control with few or no side effects, however (even if that seizure control isn't complete), the difference in cost amounts to a non-issue.

Next time, though, we'll look at an undeniable issue: the hassle of the ketogenic diet.


The Essentials: Part 2

Collin chasing his cousin, backpack in tow.

Collin chasing his cousin, backpack in tow.

Collin has a backpack. It is red and black with wide straps and lots of compartments. He carries it on the back of his wheelchair; or, if we're going somewhere without the wheelchair, on the back of one of his parents. 

The contents are nothing like what I imagined my six year-old packing up and lugging around. 

The backpack carries our second tier essentials - items that are half a step away from being nonnegotiable.

- Noise canceling headphones. Collin's uncle picked these out as a Christmas gift one year and they are one of our best and most-used tools. Because he can slip into sensory overload depending on the size/acoustics/vibe of a public place, these provide the perfect way for Collin to continue enjoying himself in a place that would otherwise bother him. And he looks really good in them.

- Extras. Extra g-tube. Extra syringe and extension. Extra gauze.

- Venting syringe. Everybody burps. Even people whose esophagus has been turned into a one-way valve via Nissen wrap. Collin burps by hooking a short extension with a smallish syringe minus its plunger to his g-tube and letting the air out. Just opening the tube port doesn't work because it is also a one way valve. Let too much air accumulate in that tummy, and you have a problem on your hands.

- Pullups and wipes. Collin is potty trained, but accidents do happen.

- iPad. Our portal to all things good. The iPad is a life saver in so many situations. It is the workhorse of our daily life. It is in use probably ten hours a day, whether for videos, audiobooks, music, vision exercises, or hand use practice. Paired with the noise canceling headphones, it can fix virtually any problem.

- Food and meds. Because of Collin's diet, we can't pick up food for him while we're out. So we need to know how long we will be gone - or more specifically, how many mealtimes that will span - and bring that many jars of precisely calculated and measured food, along with accompanying supplements.

- Norwex cloth. Collin's drooling (or 'drizzling', as his cousin calls it) has gotten SO MUCH BETTER over recent years, but some positions still make it hard to control. These cloths are super absorbent and anti-microbial, which is good considering how rarely I remember to put them in the laundry.

- Some normal things. Lotion. Glasses cleaner and case. A deer or duck call. (What?! You don't carry animal noisemakers in your bag?!)

When we were little, my sister and cousins and I always packed bags for our adventures. Toys, books, snacks, a picnic blanket that could double as a cape or a tent in a pinch. There is part of me that aches at how different Collin's bag is from ours. 

But there is another, steadily growing part of me that sees that Collin's backpack IS packed for adventure. Because of what's in that bag, we can go to the park, to restaurants, to the zoo and the orchestra. Because of that bag of items, we are free to venture out our door and into the world.