Maintaing the Keto Diet

Here is a link to a very hand guide on what procedures your Glut1 kid should follow while on the ketogenic diet.

Standard procedures for your Glut1 Kid:

It details which routine lab work to do, what daily supplements to take, and how to check for ketones. Glut1 kids and adults will be on some form of the ketogenic diet for years and even decades, so the standard procedures will also change over time — as well as the frequency of doctor’s visits.

In my opinion the ketogenic diet is not dangerous for a kid to do. Even long term.

Many of the dangers are well known, and by doing these routine doctor visits and lab work, can be prevented. Keto acidosis and kidney stones are a concern, as well as vitamin and mineral deficiencies, making it necessary for parents or caregivers to understand what is involved with the ketogenic diet and the fact that you need to pay close attention to how well your keto kid handles either low or high ketones. But to us nutritional ketosis is a healthy metabolic state to be in. It is unsurprising given the recent data that eating a high fat diet hasn’t even significantly changed Drake’s lipid profile.

It is also important to keep in mind that the ketogenic diet is the standard of care for Glut1, not a fad diet, and not something our kids ever choose to do. It can be a burden for them to endure and involves a lot of hard work for everyone involved. To a keto kid, it is not merely the latest and greatest way to lose weight and gain mental clarity, it is way of life in which you are constantly reminded of what you can’t eat.


You can’t feel to bad for a kid who just ate pumpkin pie with whipcream, turkey roll-ups and berries and cream for lunch.

Drake is healthy, happy and independent. Maintaining a low-sugar diet has been great for his overall health and anecdotally, he almost never seems to get sick with a cold or the flu. He also seems less anxious overall and he continues to maintain a happy and sweet disposition.

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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