It’s a Fine Line

We’ve gotten into such a good groove lately with the Keto Diet that I have to remind myself just how much of a balancing act it is for Drake to stay in ketosis. Every day that passes has thankfully, so far, been another ataxia-free day and another day of his brain growing and flourishing. The daily routine of eating keto meals and taking various vitamins has enabled Drake to be our awesome, fun-loving, lego-building, bike-riding, TaeKwonDo-kicking crazy-cool kid. It is also a reminder of how much of a balancing act it is for him to stay on the knife-edge of ketosis.

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Morning prescription vitamins: K-Phos and Carnitine.

It is a fine line he has to walk. On one hand he has to eat enough fat to obtain and stay in steady ketosis. But if he eats too much fat he is in danger of ketoacidosis; which if left unchecked and becomes severe, requires hospitalization and can be life threatening. Then, on the other hand if Drake eats too many carbs and sugar, or crazily eats too much protein (which the body can turn into glucose) or too many calories, which can interfere with ketosis, he can get low-blood-sugar (Hypoglycemia) and become shaky and weak or get knocked out of ketosis altogether.

So much to worry about — sometimes the anxiety can be overwhelming. But you learn. You learn that if your Keto kid gets flu-like symptoms it might be a virus or it might be the early signs of ketoacidosis. Or perhaps it is a virus, but if your kid can’t keep any food or liquids down it can lead to ketoacidosis. Or they are shaky and weak because of Hypoglycemia and a finger prick will tell you their blood-glucose levels and if you need to get their blood sugar levels back up to normal with the simple solution of a few sips of apple juice. But if they have those few sips of apple juice at the wrong time it could knock them out of ketosis and lead to an ataxia attack, gah!

Thankfully we haven’t had to deal with either of these issues yet. When we get Drake’s labs done every few months they check the acid in his blood to make sure he isn’t in any danger. High blood acidity is a normal side effect of the keto diet, but too much can be life threatening if left untreated. So it is something we have to keep an eye on.

For now I follow Michael Pollan’s advice, but with a twist (author of In Defense of Food and Cooked). His ground-breaking advice on how to eat healthy is simply: “Eat food, not too much, mostly plants”. As complex as the Ketogenic diet is for a kid to eat, it can also be boiled down to “Eat food, not to much, mostly fat.”

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Author: Debra Lane

Debra & Ken Lane maintain this blog to chronicle their son's journey of living with the rare neurometabolic disorder, Glucose Transporter Type 1 Deficiency Syndrome (Glut1 DS for short). And hope to raise awareness and understanding of the non-epileptic form of Glut1 DS. Drake’s Glut1 journey started at the age of 3 with episodes of Ataxia and Dyskinesia. Now at the age of 8 he is 2 years symptom-free — thanks to the right diagnosis and the ketogenic diet.

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