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. 

 

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.

4 thoughts on “Updating our blog!”

  1. To whom it may concern,
    We are in our third week of glut1 diagnosis. We are 1st week into starting our M.A.D. Treatment (0 sugars, 10-15 carbs) doing fairly well, but one thing. Our family has gotten sick with stomach illness. This is not the Keto flu, this is kids bring illness from school. Question for anyone is how do you treat child with upset stomach on M.A.D. Treatment? ( Example of non symptomatic child typical treatment of normal ginger ale, pedialite, Gatorade zero)

    Thanks
    Marcus

    1. Hi Marcus,

      Welcome! Getting the diagnosis can certainly be bittersweet — and there is definitely a learning curve with the Keto diet. It can be overwhelming, frustrating and emotional at times. If you are on Facebook there are a couple of Glut1 groups that provide lots of support and answers to specific question from other Mom’s and Dad’s and Grandparents who are in the trenches and trying to figure out the best way to help their Glut1 kid. Unfortunately stomach issues are a part of life for most Keto Kids. Yes the trick is to keep your kid hydrated and in ketosis at the same time. You could try Seltzer water in place of ginger ale or Propel Water or Gatorade Zero for replacing electrolytes. And perhaps a MAD recipe for keto soup. Good luck! – Debra

      1. Thank you so much for your reply. This started later last night and were trying to just get an idea because our nutritionist didn’t mention much about the recovery items to use. The sickness has gone through our family. We believe this has nothing to do with the diet, just timing of the “normal” eaters getting sick first then our son (GLUT1) getting sick next.

        Yes, it is a bitter sweet diagnosis. We’ve wrestled with our doctors ten years about what was going on.

        Marcus

        1. Oh boy, starting a restrictive diet with a stomach bug going around, no fun. But so glad you finally have the correct diagnosis!

Leave a Reply

Your email address will not be published. Required fields are marked *