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Glut1 Deficiency Diagnosis

Challenges of a Rare Disease

Following a diagnostic pathway for a rare spectrum-disease can be a muddled and troublesome journey. Finding the right diagnosis can be confusing and many times involves your child being misdiagnosed or undiagnosed. When your child’s symptoms don’t quite fit the mold of a rare disease, especially one that varies in its severity, it is not uncommon to wonder if the textbook symptoms need to be elaborated upon. Or perhaps your child actually has a different diagnosis altogether. Continue reading “Glut1 Deficiency Diagnosis”

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 here 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!”

A Quiet Anniversary

January 4th, 2019 marked Drake’s 3 year anniversary on the ketogenic diet. We didn’t celebrate. Life goes on with more challenges ahead.

I still vividly remember the tiny hospital room we occupied for 4 days, 3 years ago. The confusion and worry I felt, the feeling of being lucky and unlucky at the same time. The anger over the gross hospital food we had to make Drake eat. The triumph we felt we when he got into ketosis, and then the anxiety over how we would continue it at home. We left the hospital with Drake in ketosis; weak and shaken, with band-aids on every finger from the blood tests.

Continue reading “A Quiet Anniversary”

Chocolate Pecan Breakfast Cookie 4 : 1

 

 

This is our families absolute favorite recipe! We have been eating chocolate covered pecan cookies for breakfast every morning for over two years now. This recipe is copied from the Keto Cookbook by Laura Cramp and Dawn Marie Martenz with one addition, Lily’s dark chocolate. I melt two squares of chocolate on each cookie in the microwave, spread evenly with a butter knife and refrigerate for an hour or so until hardened. Delicious! Continue reading “Chocolate Pecan Breakfast Cookie 4 : 1”

Lazy Keto

I saw the term “Lazy Keto” on social media recently and thought that quite nicely describes what we are currently doing. We don’t measure out food on a gram scale unless we batch cook a favorite recipe, we don’t count carbs, we don’t check ketones very often and we cook meals that are below the 3:1 ratio he was originally prescribed. We are still very strict about what our keto kid eats, and if I had to guess we are still probably in the 2:1 ratio range.

We aren’t quite doing MAD (Modified Atkins Diet, 1:1 ratio) in which you focus on keeping your carb count to under 20 grams per day (for reference a medium size banana has about 27 grams of carbs and 8 oz of apple juice has about 26 grams of carbs). The 20 gram carb limit varies depending on your dietitians calculations of age, height, weight, BMI and individual nutrient requirements. But we have instead evolved a more give-and-take approach. Continue reading “Lazy Keto”