medical

The care and feeding of a keto kid (now with 100% more gifs!)

When we’ll be out of the house all day, we prep all of Oscar’s food and meds the night before. Since I had it all in one place for a change, I thought I’d give you, dear reader, a glimpse into what that entails.

Ordinarily, I do this prep throughout the day in bits and pieces, not all at once. I was surprised to learn that it took me nearly an hour in total.

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First, the entrees!

Ketogenic meals

Oscar is on a medical ketogenic diet. His nutritionists calculate the basic template for his daily meals (4 meals, 270 calories each, 3:1 ratio of fat to protein+carbs). We use that template to create specific recipes with what we have on hand, using an online program for guidance. Today, he’ll eat:

  1. Unsweetened applesauce with plain whole milk yogurt and coconut oil
  2. Ground lamb and cauliflower “rice” with butter, and a side of Gerber Puffs
  3. Scrambled eggs (made with butter and mayo), served with raspberries
  4. Chicken breast and asparagus with butter, side of blueberries

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His diet is pretty nutrient-dense: lots of lean meat and vegetables. Our family dinners are usually paleo-ish, because it’s easier to modify what we’re eating by adding butter (really, really a lot of butter) than it is to prepare Oscar’s meals from scratch. #1 and #3 are standard meals he gets every day with little variations; #2 and #4 are leftovers from family dinners.

But whatever he eats — every single meal — has to have 3 grams of fat for every 1 gram of everything else, and we have to weigh each individual component to the gram to ensure the correct ratio.

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Here’s what he washes it down with:

Keto lemonade

Oscar hates water and absolutely refuses to drink it. However, his fluid intake is calibrated as meticulously as his calorie intake, and he also has a hefty number of supplements he needs to ensure his body is getting what it needs on his very restrictive diet. Back when he drank ketogenic formula, they just got mixed in. When he switched to solid food, we had a problem.

I was very relieved to find Ultima Replenisher, a gluten-free, ketogenic, zero carb electrolyte powder. It’s actually pretty tasty on its own; I drink it myself some days. Every day, Oscar gets a little over a liter of this homebrew, which includes the Ultima and all the delicious, life-sustaining extras you see above. His version is… less tasty, but he loves it so much we have to wrestle the cup away from him.

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Between the food and the drink/supplements, we check his labs every couple months to make sure his blood chemistry is where it needs to be. When it’s not, bad things can happen very quickly.

And finally, let’s peek inside the pharmaceutical cabinet!

medications

Oscar takes six medications on a daily basis, in various combinations at various times. Because of the diet, we can’t use the usual kid-friendly syrups (so much sugar!). Instead, every medication dose, three times a day, gets crushed and compounded by hand, mixed with a drop of Stevia for sweetness. (He still tries to spit out every third or fourth dose, because: three year old.)

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Some of you might notice what’s missing from this picture: the CBD oil that gave Oscar his 15 minutes of fame about a year ago. Although we saw some limited benefit, it also made him sleepy, and the cost was prohibitive for the amount of good it did. C’est la vie.

He’s got meds for many, many things: seizures, reflux, sleep, neuroirritability (a new word I learned last year which essentially means “experiencing inexplicable and unrelenting pain that causes uncontrollable screaming for days on end”). These are just the daily meds — sometimes we get bonus ones for a short while, like the Mucinex and albuterol nebulizer we’ve been enjoying this week.

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Every once in a while, I look at the pile and think, “Gosh, that’s a lot. Maybe he doesn’t really need X anymore.” And then I try to gently wean him from X, and it turns out he really does need X after all, and I shouldn’t just stop giving him things he was prescribed for good reasons.

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And that’s every last blessed thing we concoct and feed to our keto kid over the course of a day. It looks complicated written out like this — in truth, I guess it is rather complicated — but we’ve been at this in one form or another for two and a half years now, and a lot of it is second nature.

You never know what you can get used to until you’re used to it!

 

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