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”

Maintaing the Keto Diet

Here is a link to a very hand guide on what procedures your Glut1 kid should follow while on the ketogenic diet.

Standard procedures for your Glut1 Kid:

http://www.g1dfoundation.org/uploads/1/1/2/3/112336029/keto-diet-for-glut1-3.pdf

It details which routine lab work to do, what daily supplements to take, and how to check for ketones. Glut1 kids and adults will be on some form of the ketogenic diet for years and even decades, so the standard procedures will also change over time — as well as the frequency of doctor’s visits. Continue reading “Maintaing the Keto Diet”

What do Parents of Keto Kids Eat?

I get this question all the time “Do Ken and I eat Keto too?” Yes! We follow the Ketogenic diet too, off and on, and see lots of benefits from it! We both have lost weight, we have more energy (especially mid-day when we used to have to drink coffee or soda just to stay awake) and we can often skip meals without too much difficulty. At first we did it as a way to lend support to Drake and to experience what he was going through. But now we do it as a way to stay healthy and energized.

One of the misconceptions we have noticed with the Ketogenic Diet is that people think it is high in protein; like Atkins or Paleo. But it is actually high in fat, and low to moderate in protein. You will have trouble getting into ketosis if you eat too much protein. 70% of our calories come from fat; the other 30% come from protein plus carbohydrates. We generally avoid refined and processed carbohydrates, starchy vegetables, or high-carbohydrate fruits. Higher fat meats are better for getting into ketosis, like non-lean cuts of pork or beef. This would seem like a recipe for heart problems and clogged arteries, but Ken and I have both recently had blood work done, and our cholesterol and blood pressure levels have not increased. And recent research supports our experience. Continue reading “What do Parents of Keto Kids Eat?”

What Do Keto Kids Eat?

Ketogenic Foods by Ratio.

The classic ketogenic diet of a 3:1 ratio means that for every 3 grams of fat you eat, you can eat 1 gram of carbohydrate plus protein. So 3:1 means that for every 4g you eat, 3g of that are fat and the remaining 1g is carbs + protein. That works out to eating  over 75% fat. Wow, that is a lot of fat … and math! So where does all that fat come from? What do keto kids actually eat? Sticks of butter, slices of bacon, glasses of heavy cream? Well, yes and no.

There are three main types of fats in foods: saturated fat, monounsaturated fat and polyunsaturated fat. Eating foods that are high in these fats (yes, even saturated fat) is the goal of the ketogenic diet. Eating enough fat in the right combination (or ratios) with carbohydrates and proteins, is how you get into ketosis. Eating low-carb foods is equally key, and sometimes one can get fixated on the question “how many grams of carbs are allowed for this meal???” But simply eating low carbohydrate foods is not enough to get into ketosis. This is why parents of keto kids need to be very specific about the foods their kids eat, and precise about calculating the macro nutrients. Continue reading “What Do Keto Kids Eat?”

Brownie Bites 3.5 : 1

 

I have recently discovered hemp seeds and I am a bit excited about the health benefits of them! They are incredibly nutritious, high in fat, low in carbs, and a good source of protein and fiber. They have a mild nutty taste and are full of Omega 3 and 6 fatty acids. They mix well with macadamia nuts and create a soft chewy texture. I found these to taste soft and cake like. These make a great “on the go treat” or snack for the lunchbox. Continue reading “Brownie Bites 3.5 : 1”

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. 

 

Halloween Teal Pumpkin Project for Keto Kids

Teal Pumpkin Project for Keto Kids! Make Halloween special for kids on restrictive diets with non-food treats!

We actually didn’t pay too much attention to the Teal Pumpkin Project last Halloween (the first Halloween for Drake on the Keto diet) because I assumed it was solely for kids with severe food allergies to still be included in the trick-or-treating experience by having a separate candy bowl of nut-free and dairy-free candy.

But of course for Keto kids, all Halloween candy and chocolate is hands-off.

Continue reading “Halloween Teal Pumpkin Project for Keto Kids”