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.

Glut1 Kid

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.

Keto readings for Drake have been holding steady. After 8 months on the Ketogenic diet he still gets a large 80+ reading in the morning and a super-sized 160+ in the evening. We load him up on fat with a keto chocolate chip muffin every night at bedtime, but after 10+ hours of sleep that dark purple color of hard-ketosis gets diluted back down to a lighter purple until he has his pecan cookie for breakfast.

He has not been knocked out of ketosis yet, knock on wood, and it makes me anxious to think about what will happen when he does. So far he hasn’t cheated on his “special diet” and at the age of 7 he understands how important it is. But still, it can be pretty hard for a kid to not be able to eat hardly any carbs or sugar.

We are in for the long haul with this diet. This is pretty much Drake’s only treatment option, and we are immensely thankful for it, and immensely happy with the improvements Drake has made so far. He is on a strict 3:1 ratio, and luckily produces ketones easily. We will adjust his ratio over the years and hope that he will do well with lower and lower ratios as time goes on.

This is my first blog post, and I have been pondering on what tone to take. I have decided that this Glut1 Ataxia blog is not going to be a journal of our daily lives with a keto kid; our life is a little too routine and boring for that right now. Instead my husband Ken and I hope to raise awareness about Glut1 Deficiency Syndrome in general, and more specifically about non-seizure Glut1 Deficiency in which kids experience movement disorders such as ataxia, dyskinesia, chorea or dystonia and do not have seizures. We also hope to pass on tips and ideas about the Ketogenic diet as a treatment for Glut1 Deficiency.

When your kid has a rare disease, you need to become an expert in that disease in order to advocate for him, and empathize with him. We hope to increase our understanding of Glut1 Deficiency by writing about it, and to share with you all what we have learned so far.

Ken, Drake, Chase, Debra Lane.
Ken, Drake, Chase & Debra Lane. © Shutterbug NC. https://shutterbugnc.wordpress.com/

We will take you on our journey of how we discovered our son has such an extremely rare-disease that, so far, less than 600 people worldwide have been diagnosed with! And how this rare incurable disease has a dietary treatment that, if it wasn’t for one family and one doctor and his dietician, wouldn’t exist today.

Check out this blog entry on how Drake became diagnosed with Glut1 Deficiency Syndrome.

And stay tuned for keto recipes, product reviews, and…. to find out what a keto kid eats!

 

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.

One thought on “Raising Awareness of Glut1 DS Ataxia – First Blog Post”

  1. These are excellent posts, Debra. Hopefully the word will spread so more parents will know what to watch for when something is amiss with their precious little ones. Drake is so fortunate that you and Ken kept up the quest to get to the correct diagnosis and treatment.

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