And so it Begins: Movement Episodes Begin Again

What has changed?

With Drake’s long movement-disorder freedom, we have forgotten what it is like to have him experience leg spasms (dyskinesia) again. We will be forever grateful to the ketogenic diet and the difference it has made in his life, and the difference it has made in the lives of his parents, but we have come to a point where he isn’t producing ketones like he used to.

We knew this day would come; but we didn’t think it would happen so soon. Glut1 is such an individual disease. We take all the information we hear with a grain of salt. It can cause cognitive delays, except for when it doesn’t, it can cause seizures, except for when it doesn’t. It can be associated with ADHD and Autism, except for when it isn’t. We feel so lucky that Drake is a mild case and doesn’t have many of the problems associated with Glut1.

So knowing that the movement episodes can sometimes become worse over time as your kid ages and has hormonal changes and gets near puberty is something we filed away, to be dealt with at a later time. Hearing that the ketogenic diet can lose effectiveness over time is also something we thought we could just deal with later. But now, after 3 years, we are experiencing the loss in efficacy in real time and Drake has had 3 bad movement episodes in the past few weeks. Continue reading “And so it Begins: Movement Episodes Begin Again”

Taking MAD on Vacation!

And being able to go out to eat for grilled chicken and vegetables.

Keeping Keto in Disney World and Universal theme parks in Orlando is going to be a challenge. Drake has been on “The Diet” for three years, and so by now we have lots of experience and practice traveling “on the diet” and packing snacks for the day “on the diet” and even going out to eat “on the diet”. But this is our first vacation flying on a plane and then not going to a grocery store the first day after we arrive. Yikes.

Drake is pretty much doing MAD (Modified Atkins Diet, 1 : 1 ratio) at this point, which makes it a lot easier to go out to eat and order food off the menu. We no longer restrict his protein so he can order plain meat and fish off the menu like: grilled chicken, hamburger with cheese (no bun obviously) salmon, bacon and eggs and even turkey legs. The trick as always will be to get enough fat into him. Continue reading “Taking MAD on Vacation!”

Happy Rare Disease Day 2018!

The Glut1 Deficiency Foundation has been sharing   (Love) Some1 with Glut1  stories as part of an online fundraising campaign.

This campaign raises awareness of Glut1 and provides funding for programs, projects and services. I am happy to post that Drake’s story has been included in this campaign! Check it out on the G1 Foundation website.

Drake has a powerful and unique story to tell. But unfortunately, like other Glut1 kids, his pathway to diagnosis took several years — this needs to change! It is therefore extremely important to us to raise awareness of Glut1 Deficiency Syndrome and the non-epileptic forms of Glut1 that are currently vastly under-diagnosed — so hopefully, this pattern won’t be repeated for future patients. Plus we are showing how important and life-changing, the ketogenic diet is for mild Glut1 kids too; even if they don’t have seizures.

Check out the Glut1 community video. Drake makes an appearance at the 36 second mark. I think he is a natural in front of the camera!

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.