Updating our blog!

We are celebrating over one year of Glut1 blogging with a blog refresh. We are updating Drake’s Glut1 Story to include “what early warning signs to look for” and “what early interventions have helped”.

This past week I have been updating our blog!

You will notice it is newly organized, categorized and labeled. Wahoo! Hopefully this will making reading and searching this site easier. I’ve also added a navigational menu with pages that explain what Glut1 Deficiency is and what early signs to look for on the movement disorder side of this rare disease. Plus info on what the Keto diet is and a little about ourselves excerpt.

Thank you to all who have followed Drake’s Glut1 Journey so far, and thank you to those who have reached out to me for advice and support. We are so grateful that we are helping to spread the word about Glut1 Deficiency from a mild kids unique viewpoint.

We will continue to tell Drake’s story and add to his “Glut1 Journey”. And we will also continue to write about our experience of doing Keto on a kid long-term — what differences it has made along the way and what adjustments we will make over time. Along with hands on practical advice from a “Mom & Dad in the trenches” perspective. 

 

Raising Awareness of Glut1 DS Ataxia – First Blog Post

This blog is dedicated to raising awareness about the movement disorder type of Glut1 (also known as, non-epileptic Glucose Transporter Type 1 Deficiency Syndrome) and the only known treatment, the ketogenic diet.

Outside my window it’s a beautiful fall day, and I’m feeling pretty inspired that I can finally write down my thoughts about Glut1 Deficiency Syndrome (Glut1 that presents with Ataxia) while my boys are both in school.  Chase has just started Pre-K. And Drake, my 7-year-old Glut1 son, is tracked back in until mid-November (yay!!! the joy of year round school) and doing very well in 1st grade.

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