Keto vs Keto

I spent a year living and working in the Bay Area tech industry where every next person has gone keto, so when M's epileptologist suggested he try the ketogenic diet, I figured I knew all there was to know: high fat, high protein, not a lot of carbs, and he'd be an asshole for the first week of it.

Turns out, there's a huge difference between the weight-loss fad diet version of keto and therapeutic keto used under medical supervision. Except for the week of being an asshole. That's still true.

The ketogenic diet was actually originally developed to treat epilepsy. A century ago, doctors noticed that if they stopped feeding their epilepsy patients, they stopped having so many seizures. Believe it or not, starvation is not a very sustainable method of treating anything, so they worked to figure out what could best simulate a state of starvation. The answer? Ketosis!

Ketosis is a metabolic state that tricks your body into thinking it's starving, causing it to burn fat for energy rather than glucose. In a famine scenario, it is better for survival to burn the stored energy than to try to burn the limited energy that's taken in. The version people use for weight loss usually has a slight calorie deficit, so that's why people see a lot of success with weight loss - it goes straight to burning the fat your body has stored for just this starvation situation.

The trick with a therapeutic diet to treat epilepsy, though, is that you don't actually want the patient to lose weight. In particular, with babies and young children, they need to be *gaining* a lot of weight. Also, for epilepsy patients, having your body quickly switch metabolic states can be a seizure trigger - so on this version of keto, there are no cheat days. Once you're in ketosis, you need to stay in or risk problematic side effects.

So the way they do this is to identify a patient's ketogenic ratio - the ratio of grams of fat to combined grams of protein and net carbohydrates at which their body starts producing enough blood ketones to be considered in ketosis - and a dietician works with you to figure out meal plans to keep the keto kid at the right ratio. A common ratio for an older child or adult epilepsy patient is 4:1. Babies apparently tend to go into ketosis at lower ratios, so M is only at 1.5:1. That means the ingredients of single meal (defined as food consumed within a 20-30 min period) has to be weighed out and consumed at that ratio, or he risks coming out of ketosis. This means there's no "I'll have my fat and protein for breakfast and then a salad for lunch" - all the carefully measured out carbs, protein, and fat for a single meal have to be consumed, in their entirety, at one sitting. If you have ever attempted to get a very young child to eat literally everything on their plate, you may start to understand our challenge.

The ketogenic diet is not actually very healthy. It puts your body into survival mode, which is not a healthy sustainable mode your body is designed to be in, and the high amount of fat required for the therapeutic diet to keep a growing kid growing puts them at risk for cholesterol and liver problems. When metabolic shifts are seizure triggers, it means going into ketosis is a health risk - as is the "keto flu", the adjustment period where you just feel like crap for several days as your body gets used to lower blood sugar. It is also, as our dietician said, not a balanced diet - especially in modern society where a lot of vitamins and minerals come from fortified grains like cereals and breads, which are abruptly removed from a kid's diet. So doing therapeutic keto requires a lot of medical oversight.

M's diet started with a four day hospital admission. They took baseline blood samples and put him on a 24 hour liquid diet of increasing proportions of cream to milk to kickstart the process. They took blood regularly to identify when he started producing enough ketones to be considered ketotic, and identified the tipping point (in his case, his 1.5:1 ratio). They carefully monitored how acidic his blood was, since too many blood ketones can cause a dangerous condition called acidosis, which is mitigated by giving him baking soda mixed in with his cream/milk combo twice a day. They checked a number of different metrics to make sure his organs were responding well to the change, and regularly monitored his blood sugar, especially since he got an (actual) stomach flu two days into it and vomited on my poor husband for two hours straight. This kind of monitoring is ongoing - he'll have regular bloodwork to make sure the extremely high fat diet isn't causing any problems. We have to measure his ketones using urine strips twice a day for now, soon to go down to once a day, to make sure he's staying at the appropriate level of ketosis for seizure control. And as he grows, this blood work and urine testing will likely eventually point to a need to go to a higher ratio, as the current ratio begins to produce fewer ketones. We also have to supplement his diet with a powdered multivitamin twice a day; no Flintstones vitamins for him because, well, carbs.

And among other fun challenges, this version of the diet is so sensitive that we have to check all topical compounds - lotions, soaps, shampoos, sunscreens, bug repellants, diaper rash ointments, etc - for carbohydrate content that could be absorbed through his skin, and all his medications need to be special (expensive, often-not-well-covered-by-insurance) low-carbohydrate liquid compounds from special pharmacies, or split and crushed adult pills mixed in with something we can convince him to swallow. Common kid things like Play-doh and paste have to be carefully monitored when he's around so he doesn't try to eat them. We have to feed the dog on a different floor of the house so that M doesn't eat any spilled dog food. Literally every possible source of carbs has to be considered and accounted for, and any significant slip-ups mean we have to force butter down his throat ASAP.

I'll get more into the logistics of how you keep a 1 year old on this diet later - that's pretty much the point of this entire blog anyway - but hopefully this gives you a taste of what sort of commitment this diet is when it's used medically, and why I may not be as grateful as you'd expect when well-meaning friends offer their own keto experiences to "help." Sorry, friends!

Note: I am not a medical professional. The above is not medical advice. Consult your/your child's medical team before making any dietary changes to treat any condition.