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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”

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”

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!

One Crust Mini Raspberry Pie

One Crust Mini Raspberry Pie   2.5 : 1.  Make’s 4 mini pies.

Easy pie recipe for a sweet treat full of a yummy low-carb fruit. Top with Reddi Whip cream (1g of carb per 5g serving) or better, 40% whipped heavy cream to increase the ratio (or use less raspberries). I used the Charlie Foundation’s pumpkin pie recipe for the crust.

These mini silicone pie molds make a perfect size for an individual dessert and are of good quality.  Continue reading “One Crust Mini Raspberry Pie”

3 Easy Heavy Cream Recipes

I usually have three to six cartons of heavy cream in my fridge at all times, and I still worry about running out when I’m doing a batch cooking day! Heavy cream is the superstar of fats that keto kids tend to rely heavily on (no pun intended) — but getting this concentrated form of fat into your keto kid’s diet  is not always easy. Kids of course have a mind of their own about what they will or will not drink, and drinking straight heavy cream can be challenging!  So, here are three easy recipes and hopefully three easy ways to get this important source of fat into your kid.

Tip: Organic heavy creams don’t have antibiotics, hormones or GMO anything’s, plus they contain only cream and no other filler ingredients. Continue reading “3 Easy Heavy Cream Recipes”