Author Archives: Christy Anderson Brekken

About Christy Anderson Brekken

In no particular order... Instructor and Researcher, Department of Applied Economics, Oregon State University. Educational background: University of MN Law School, 2005. MS in Ag and Resource Economics, Oregon State University, 2011. Teaches: Agricultural Law, Environmental Law. Mother: brilliant 9 year old boy; brilliant 6 year old girl with benign myoclonic epilepsy on a modified ketogenic diet therapy. Married to: Ted Brekken, OSU Department of Electrical Engineering. Ride: Xtra-cycle Edgerunner with kid seat; 400-pound cargo capacity. Grew up: Devils Lake, ND. Lived in: Minneapolis/St. Paul, MN, Pohang, South Korea, Trondheim, Norway, Corvallis, OR. Interests: Cooking, knitting, eating, yoga, laughing, hiking, traveling, staying sane.

One Year Seizure Free!

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Milestones are always a time to celebrate and reflect. Nora experienced her last seizure 1 year ago today. In response to that seizure, we decided to move her ratio up to 3.5:1 and we seem to have found the sweet spot. Thank goodness for seizure freedom. Thank goodness for the ketogenic diet.

Thanks to Ted, my partner and the best papa that Nora could have. No one loves her more. You bought us a place of honor among the neurologists and residents at OHSU with your graphs. You helped us to think about the problem systematically while your whole heart was crushed by the weight of it all. We are a hell of a team.

Thanks to Anders for being the best big brother in the world. You have been caring and sensitive to Nora’s needs, far beyond your years while being a normal big brother to Nora in every way. If offered 3 wishes, one is always for Nora to be seizure free and done with her diet (he also wishes to fly and for a magic wand).

Thanks to Nora’s doctor, Dr. Carter Wray, at Doernbecher Pediatric Neurology at OHSU for showing up just when Nora needed you, counseling us, encouraging us, adoring Nora and keeping it real. Thanks for being on our team.

Thanks to Nora’s dietician, Karrie Stuhlsatz, for counseling me through ratios and diet management and hearing out my long winded questions and speculations. Thanks too for being on our team. When we wanted to move the ratio up after that last seizure instead of trying a new drug, you reassured me and supported that decision. I was am so grateful.

Thanks to our family and friends who have supported us all along, praised and loved us through it all, and have completely trusted and respected Nora’s diet restrictions. Thank you to our friends for being thoughtful by giving me the heads-up on picnic and party plans so that I could prepare a matching meal for Nora. Thanks for your patience as I and my gram scale have occasionally invaded your kitchen. Thank you most of all for continuing to invite us to your gatherings, even with all of our complications. Thanks for asking questions and listening to the (again) long winded answers.

Thanks to the other keto-parents out there who have blazed this trail for us and provided inspiration. We celebrate and mourn with you on your journey too. You are a new part of our family and our hearts are always with you. Thanks to the Charlie Foundation for bringing us together and giving us resources and hope.

We’ve come a long way, but it’s probably only half-way into the journey. The rule of thumb is 2-years seizure-free, then weaning will take some time. Even then, we will ease off slowly, so we might have more than one year ahead of us, and I anticipate always avoiding high-sugar foods for Nora. Thankfully, our long-term changes are healthy for every body.

We’ve overcome many hurdles and Nora has defied all of our expectations for compliance and clinical response. She’s the real star of the show, and she knows it! We are all just the supporting cast giving Nora everything she needs to shine.

Ted says:
I’ve mixed feelings.  At once sad for the memories of what was — and the possibility of relapses, however remote — and also deeply grateful for what we have now.  This year has felt like many, but at the same time it is short in the course of epilepsy.  There are many contradictions.  But one thing is true: in December of 2011, when Nora was having many seizures and there was no improvement in sight, I would have given almost anything to be here now, with a healthy, happy, spirited, seizure-free, distinctly-Nora girl.  Christy did a wonderful job thanking everyone.  I echo that.  And thanks to Christy.  Nora doesn’t yet understand what you are doing for her, but I do, and it is written into Nora’s branching path, which every day advances further to a brighter place.

Toasting Bread

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Please note: This recipe and nutrition information is developed by a parent. It is not medical advice. Use your best judgment when preparing and serving foods on the ketogenic diet, and ask your dietician before serving if you have any doubts. 
 

I promised to post a bread recipe long ago. I wanted to try this out a few times before posting it, and it’s finally time to share. Note that a stand mixer is required to make this batter. I don’t want to be responsible for the loss of another hand mixer. (Click on pictures to see larger image).

Having a bread on the keto diet seems to be really important to a lot of kids. I can imagine that it would be critical for older kids who remember “normal” food and see sandwiches around them at school. Nora’s biggest loss when she first started the diet was toast, although we don’t think she really remembers “toast” as the rest of the world knows it.

Nora has especially enjoyed this bread as peanut/almond butter (and butter) and keto-jam sandwiches, but it also holds up well enough to make grilled cheese or toast!

To be clear, it does not have the consistency of wheat-based loaf bread. It is a quick bread and even smells like banana bread to me, even though there is not a hint of banana in it!

This recipe is adapted from the “Toasting Bread” recipe in The Joy of Gluten-free, Sugar-free Baking. There are several similar recipes in that cookbook. The key to this one appears to be the egg whites, which give it a dryer texture after toasting. But after I substituted heavy cream for milk, it’s not exactly a “dry” bread.

I have to address how to use a loaf recipe in the ketogenic diet, because our typical procedure is to pre-weigh the batter and then cook accurate single servings. In this recipe, you will bake the loaf then cut servings of varying weights, and you have to know how to account for that. I’m using these calculations for Nora’s meals because I have verified it myself and we have had no problems. But if your kid is very sensitive or just starting the diet, you probably want to stick to recipes that weigh the batter into servings rather than these batch or loaf recipes that rely on good estimates. I want to be very clear about my procedures here so that you can make the best choices for your kid’s diet. If you are using LGIT or MAD, you are probably just fine with this bread. For the keto diet, you may want to pre-weigh the batter and post-weigh the bread when it is done and do your own calculations. Or weigh it out into smaller loaves so that it is all pre-weighed and adjust the cooking time accordingly. (I also explained this in the Holiday Cookies post, but eventually decided it was much easier to pre-weigh the cookies. Slicing bread to a certain weight is easier than weighing and calculating for each baked cookie.)

The recipe and nutrition information is for one whole loaf, 1169 g of batter. To convert this to nutrition information per gram of baked bread, I weighed the loaf when it came out of the oven and cooled, which was fairly consistant from loaf to loaf: 1057 g. It is lighter than the batter because water cooks out during baking, while the macronutrient breakdown remains the same. Therefore, I take the nutrition information for the full 1169 g of batter and divide it by 1057 to get the per-gram nutrition information (sorry, no fancy nutrition panel for this):

Nutrient             Per gram               40 g serving
Net carbs:         0.033 g                     1.31 g
Protein:              0.117 g                     4.67 g
Fat:                      0.357 g                   14.28 g
Fiber:                  0.075 g                      3.0 g

Ratio:        2.39:1

To calculate it into a meal for Nora, I choose an amount that will fit into her meal, usually 30 to 40 g. Then I cut a piece of bread to that weight. See above for the breakdowns for a 40 g slice (or 2 very thin slices). It packs in a good amount of protein and fiber! A typical meal would be 35-40 g of bread, equal parts natural peanut butter and butter (8 g each, could use almond butter instead), 8 g keto mixed berry jam (could also use crushed raspberries), and 30-40 g of heavy cream steamed with a touch of cocoa for “hot chocolate.” Hits the spot for a kid!

Toasting Bread
(nutrition info for batter, whole loaf)
227 g Bob’s Red Mill Organic Golden Flaxseed Meal
227 g Bob’s Red Mill Hazelnut Meal
32 g sesame seeds
32 g sunflower seeds
20 g baking powder
3 g Bob’s Red Mill xanthan gum
3 g salt
340 g Organic Valley Heavy Whipping Cream
285 g egg whites (about 6 eggs)

Preheat the oven to 375. Line the bottom of a 4.5 x 8 inch loaf pan with parchment paper, then lightly coat with oil.

Weigh the sesame seeds and sunflower seeds, then grind to flour in a clean coffee or spice grinder. You could opt to leave some of each whole if you prefer whole seeds in the bread. Combine with remaining dry ingredients: flaxeed meal, hazelnut meal, baking powder, xanthan gum and salt, and mix well.

In the bowl of your stand mixer, combine the cream and egg whites. You may add a non-carb liquid sweetener here if desired. Blend with paddle attachment thoroughly. Add the dry ingredients, and mix on medium for 2-3 minutes, until you have a thick, sticky, aerated batter.

Pour the mixture into the prepared pan. Bake for 45 minutes, then rotate and bake for another 35 to 45 minutes until golden and springy when pressed in the center.

Transfer to wire rack and cool for at least 5 minutes before turning out of the pan. Loosen around the edges with a thin nice. Cool at least 15 minutes before slicing. Store in the refrigerator.

Because Nora eats so little at a time, I cut the loaf in half to use half and freeze half. She can eat sandwiches for awhile, move on to other foods, and when she asks for bread again I can just get the other half loaf out of the freezer.

When you read the ingredients, you probably thought (as I do), “what about the egg yolks!?!” I’m always trying to use a whole egg. This recipe is the perfect match to keto ice cream on a big cooking weekend! That recipe requires about 6 egg whites. So there you have it. Bread and ice cream. You have everything you need for a very happy keto kid, and no wasted eggs parts.

 

Don’t call me cupcake…

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and don’t feed me cupcakes…unless they are keto-cupcakes! Just to make the point, Nora is holding one of her 4:1 cupcakes in the photo!

We ordered these great keto t-shirts through http://www.ketogoods.com/SHOP.html. Proceeds from each order go to The John M. Freeman Pediatric Epilepsy Center at John Hopkins Hospital to support research and efforts for the ketogenic diet.

They came with 5 stickers with the same message: “Please don’t call me cupcake and DO NOT feed me cupcakes. I’m on a special diet for epilepsy.” The stickers will be great to put on Nora’s lunch boxes, just as an extra reminder to everyone.

Nora got another purple shirt (more her size) that says “Hey, I’m on a magic diet for epilepsy so please do NOT feed me.” I like that one, but Nora preferred the cupcake one, of course.

My t-shirt says: “Someone I love is on the ketogenic diet for epilepsy.” Because it’s true.

 

Sushi Celebration

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We so rarely go out to eat at a restaurant with Nora. We have probably been out with her about 10 times since she has been on the diet, and I can only think of 2 occasions when she ate some of the food at the restaurant–only when we have been at the coast eating seafood. Usually we pack her food and bring it into a friendly place. Last night Nora started asking to eat at a restaurant out of the blue, and as it was the last day of winter quarter and spring break is here, we decided to go out for a sushi celebration and honor her request.

Going out for sushi feels pretty safe because the food is minimally prepared. Both of our kids love salmon sashimi and edamame is awesome for Nora. Have I mentioned that before? Edamame is awesome! I forgot about it for a long time until I found some in the freezer earlier this week. Here’s the nutrition snapshot of 30 grams of Cascadian Farm shelled edamame. It’s not high ratio but it’s low carb, and you don’t find even that much fat in most veggies. This is fairly representative of the nutrition information from other brands and generic versions that I can find listed online.

Edamame in the shell is also awesome because it keeps Nora busy and happy.  Last night she got 30 g of edamame, pretty much all of her dinnertime carbs. We calculated her portions before leaving home then brought along the gram scale to measure it out. To serve it, I estimate the number of beans she can eat in 30 g then count out the beans in the shells.

After the edamame is ready, I pop some beans out of the pods and add them to the scale until I get up to 5 g (it’s usually 6 to 7 beans, depending on the size). To serve 30 g, I need 6 times that number of beans. Then I count out the beans in the shells for her. Last night she got 40 beans, so at 2 or 3 beans per pod she ended up with about 15 pods. Doing it that way is an estimation, but it averages out the variability in the bean size by weighing a sub-sample of the beans in the serving. Nora loves popping them out of the shell and it keeps her busy at the restaurant or kitchen table.

For the rest of her meal, she got about 1 slice of salmon sashimi (25 g). We brought some flacker (6 g) with butter (7 g) and some “hot chocolate” (steamed cream and cocoa powder) to round out the fat in her meal. Everyone was happy. Anders loves sashimi too. We got 1 order of sashimi to split between the kids because Nora gets only 1 slice. We could have weighed more for her and compensated with more fat when we got home, but she was feeling “fat and satisfied.” Anders ate the rest of that order of sashimi, the miso soup, some edamame, and most of another order of sashimi because he was still hungry. He’s not a cheap date!

Then we went home and finished off our Japanese-themed evening by watching Ponyo together. A fun and easy night was had by all and Nora was happy to go to a restaurant. She loved the room with the traditional short tables. She kept exclaiming that the room was so small. She felt like a giant! And the waiter was super tall and skinny because he had to crouch down to serve us! It’s always fun to see the world anew through a child’s eyes.

Food scientist Nora

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We were out of baked goods for Nora, which naturally leads to a cooking Saturday. And naturally, it leads to Nora in the kitchen with me. She’s a creative cook!

I like to let her experiment, so our usual procedure involves Nora looking in the fridge and picking out some ingredients. Then I apply my food knowledge to help her combine them to create something edible. While I was on the phone and barely supervising, she took out sticks of string cheese and sprinkled liberally with cocoa powder. Hmmm, interesting start.

We learned from G’ma Margie that string cheese is good when microwaved until gooey and taffy-like, so that’s what we did with her string cheese and cocoa to get Choco-Cheese. Microwave then mix! Nora ate hers up. Mine was…ok. I’m not sure that Nora will ever request it again, but it was a safe and fun experiment! We weighed hers out at 14 g of string cheese and 1/2 g of cocoa powder, which I built into a morning snack for her.

Our next experiment built off of the first recipe that Nora concocted, Blueberry Monster Mash. Today we made Choco-Strawberry Monster Mash. I’m tempted to call it Frankenberry, but that name has too much baggage! It’s simple and Nora loves to run the food processor. She enjoyed some with lunch and extra strawberries.

Choco-Strawberry Monster Mash
(Makes 10 servings at 18.9 g each)

60 g strawberries
100 g macadamia nuts
10 g coconut oil
1 g salt
15 g water
3 g Rapunzel Organic Cocoa Powder

Process all in a food processor until smooth and enjoy! Remember, if you use a different brand of cocoa powder, you must update your nutrition facts. As always, this is an approximation for your reference based on the ingredients and brands listed.

Monster mash has been a very nice addition to Nora’s line-up. We don’t have it made up all of the time, so it’s kind of a treat. She also likes to eat whole macadamia nuts, which she calls “crunchy munchies” and are a staple of the keto diet at a 5.4:1 ratio. Getting some extra coconut oil in here and adding some other sweetness with the berries packs in a lot of flavor and goodness, and still makes a 4.7:1 ratio that helps to round out a meal.

Our last experiment was in the breakfast realm. Nora gets tired of her same breakfasts, but it’s hard to have several things on hand. It’s also hard to let her choose in the morning because on work/school days we build her meals the night before from breakfast through afternoon snack and don’t have the time to change it up in the morning.

Today she decided that she wanted to go back to gingerbread for breakfast, but I’m giving it a new life as cereal, ala my Re-Purposing Recipes post. I decided to go for a cereal again because she was watching Anders eat Chex recently and said, “I can’t wait until I can eat that when I’m done with my diet.” She’s amazingly mature about it, but it also breaks our hearts a little bit. Giving her keto cereal is the least that we can do.

You could use Dawn’s original gingerbread recipe from ketocook.com. I realized that I did not post my adaptation here yet, so here it is, in cereal form.

Gingerbread Cereal
(Makes 2.4 servings of cereal at 28 g each)

15g european-style butter, room temperature
20 g Bob’s Red Mill Hazelnut meal
5g Bob’s Red Mill Flaxseed Meal
5g Bob’s Red Mill Coconut Flour
20g egg, raw & mixed well
1g cinnamon
0.2g ground cloves
0.3g ground ginger
0.5g pure vanilla extract

Mix all ingredients well in a stand mixer or with a hand mixer until smooth and well incorporated. Place dough in a ball in parchment paper and flatten, then refrigerate for at least 30 minutes.

Preheat oven to 300. Divide dough into 28g portions (it doesn’t come out even. I made one odd-sized cookie and calculated it into Nora’s snack today, or use it as a taste tester for the rest of the family). Space the dough balls 0n a silicone mat and cover with parchment paper, then roll quite thin with a rolling pin. Because you want to get it thin, I find it easier to roll it right on the cooking surface to avoid losing it in the transfer. You see here that I made a double batch, so I had 4 servings. No, they are not a uniform size or shape, but they are a uniform weight!

After they are rolled out, push the edges up to avoid a thin crumbly edge. Then use a knife to press down into the dough to score them into pieces–squares, rectangle, triangles, trapezoids  whatever has straight lines! Don’t drag the knife through or you will lose a lot of dough. My serrated-edged bread knife worked well.

Bake for 15-20 minutes until very dry and crisp. When they have cooled, it is very easy to snap them into squares. They were surprisingly sturdy little things! Now we have 4 servings of cereal. The nutrition information above puts them at 1.34 net carbs (precisely, from my spreadsheet) and 2.8:1 ratio. I will add 8 g of Organic Valley heavy cream thinned with water to make “milk” to serve a 3.5:1 breakfast of 156 calories. Serving this with 13 g of heavy cream will get you to a 4:1 ratio and 174 calories.

The longer we go on with the diet, the more I come to believe that it’s all about keeping Nora happy. When she starts complaining in the least, it’s time to get creative again.

 

Fruit Souffle

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Hot out of the oven and still poofed up!

This one is adapted from a recipe shared by my friend Karen, who also keeps a lookout for Nora-friendly recipes for me. I didn’t have to do much to modify it; the original is from Primally Inspired’s Breakfast Fruit Souffle.

It was pretty easy to make, particularly if you have a stand mixer. I was burnt out on recipes with whipped egg whites until I got my stand mixer. It takes a bit of experience and persistance to get them fully whipped if you have a hand mixer, and lord help you if you are doing it by hand. I was intimidated by the notion of a “souffle,” but Nora eats it after it is cool anyway so no pressure to serve it before it falls. And you will see below that I whipped them all together then divided into 4 measured servings, which reduced the time in the kitchen.

Deflated after cooling, but still delicious!

Best of all, it was a smash hit! Nora ate hers so fast that I didn’t have a chance to take a picture. I always use a first-batch serving for the rest of the family to taste test, and when Anders tried a bite, he did his dreamy “this is so good I’m going to faint” eye flutter and smile. I agree, it was excellent.

But it is not high ratio. It’s only 1.5:1. If used as a snack or breakfast for Nora, I would pair it with 24 g of heavy cream (steamed or in tea) to get it up to a 3.5:1 snack totaling 170 calories. I think it is possible to sneak more fat into the egg mixture, but it’s also nice to have some food that are not so fat-laden on their own. I might experiment with upping the ratio another time. For now, it’s nice for the LGIT or MAD diet and works if paired with another fat to reach the desired ratio for the ketogenic diet. Gluten-free, dairy-free, nut-free.

Nutritional information for 1 serving (50 g) of Fruit Souffle. The recipe makes 4 servings. Analysis from www.caloriecount.com

Fruit Souffle
makes 4 servings

40 g strawberries
20 g blackberries
20 g raspberries
20 g coconut oil
32 g egg yolk
60 g egg white
6 g vanilla extract
2 g cinnamon
No carb sweetener to taste

Preheat oven to 350 degrees.

 

Measure 10 g strawberries, 5 g blackberries, 5 g raspberries (all cut or broken into pieces) and 5 g coconut oil into each of 4 ramekins. If you use frozen fruit, put them in the oven while it preheats to thaw them and melt the oil.

Separate the whites and yolks from 2 large eggs. Weigh the whites, then whisk on high in a stand mixer or with a hand mixer for several minutes, until stiff peaks form.

While the whites are whipping, measure the yolks into a separate bowl and add the vanilla, cinnamon, and a bit of no carb sweetener of your choice. I used 2 g of Nora’s Cytra-K, which I use to sweeten everything for her. Mix the yolk mixture well. It turns out super cinnamon-y, which makes it light brown and extremely fragrant and delicious. I think a touch of sweetness is nice to balance it out if you use a no-carb sweetener, but it doesn’t require much.

After the whites are whipped until stiff, carefully mix in the yolks. I put them into the mixer on low for less than 1 minute and it turned out fine. You could also fold them in by hand.

Take the ramekins with fruit out of the oven if you have not already done so, and mix it up. Spoon 25 g of the egg mixture into each ramekin on top of the fruit. Place them in the hot oven and bake for 12-15 minutes, until browning slightly on the top.

They came out beautifully puffed up, light brown and smelling of cinnamon. I let them cool on the counter so they deflated before serving, but we aren’t uptight about that kind of thing around here. I tried to max out the amount of fruit while keeping it under 2 g of net carbs, but it is still just a bit of fruit on the bottom. The egg mixture was so delicious though that it was very nicely balanced. A real treat with a good amount of protein and some precious fiber.

 

PBJ Breakfast Muffins

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Variety is the spice of life. But routine is the method of survival for the keto parents. So we do a bit of both to keep everyone happy.

I just said that I haven’t been developing new recipes lately, didn’t I? Didn’t I say that we have our happy rut and Nora is pretty happy with her regular foods? Well, the only constant is change.

Nora had been happy eating her pumpkin cheesecake bars for breakfast for at least 2 months. Before that it was the hazelnut breakfast cookies. I would make up a big batch then freeze some and take them out as needed. I could get away with baking a breakfast about once per month. And there is nothing better than pulling out an all-in-one breakfast in the morning. When we started this, we were making scrambled eggs everyday, but that just wasn’t sustainable.

But Nora is tired of her pumpkin cheesecake bars now so it was time for a new recipe. I thought about going back to the hazelnut breakfast cookies, but my sister just sent me this recipe for Peanut Butter and Jelly Breakfast Bake. She’s a good cook and nutritionist, so she can spot a recipe that could be modified for Nora’s needs. I played around with the recipe this morning and found another winner! At 3.5:1 and 167 calories, we can pull it out of the fridge and plop it own at breakfast time.

You can see that the original recipes is dairy-free, using almond milk and coconut milk. I substituted heavy cream and coconut oil, but if you are doing dairy-free but still want a higher ratio, you could use coconut milk or almond milk where I used cream here. My version is also gluten-free, whereas the “Uncle Sam” cereal in the original is made primarily from whole wheat. The psyllium husks and flaxmeal seemed like a natural substitute and packs in a lot of fiber. Nice way to start the day.

PBJ Breakfast Muffins
(makes 12)
50 g Bob’s Red Mill hazelnut meal
12 g Bob’s Red Mill Organic Golden Flaxseed Meal
12 g Whole Psyllium Husk (from our local natural foods co-op)
18 g Ultimate Nutrition whey protein powder
0.5 g salt
2 g vanilla extract
1 g Baking Powder
3 g ground Cinnamon
50 g Adams 100% Natural Peanut Butter
190 g Organic Valley Heavy Whipping Cream
60 g coconut oil, melted
72 g raspberries

Preheat oven to 350 degrees. Measure and mix the dry ingredients into a bowl. Measure and mix the wet ingredients into a separate bowl. Be sure to get the peanut butter well incorporated, along with the melted coconut oil. It needs to be evenly distributed.

Pour the dry ingredients into the wet and mix very well, until even. The psyllium husk needs a few moments to absorb the liquid, and when it does it will be a thick batter.

Measure 33 g of batter each into 12 silicone muffin cups. Place 6 grams of frozen raspberries on top of each–you can break them up and push them in a bit to get them nicely distributed.

Bake for 15-18 minutes. The fat will bubble up while the edges brown. The bubbles will subside when you pull them out of the oven to check them. All of the fat re-incorporates into the muffins as they cool, and they should come out of the silicone cups easily when they are completely cool.

You could certainly add a few drops of no-carb sweetener if preferred. If you need a higher ratio, it would be lovely with whipped cream on top. Or with greek yogurt mixed down with English Double Cream for more calories.

Or if you need to use a non-dairy version and get a lower ratio with coconut milk or almond milk (you will probably need to decrease the liquid, or it may be too runny), you could boost the ratio by adding non-dairy whipped cream as well.

I just tried one, and I would eat these for breakfast myself. I think I’ll make a pan of them and cut into bars (substituting coconut milk for the cream for myself). To make this part of a MAD diet, I would back off the coconut oil and eat it with full fat Greek yogurt. Mmmm.

Inspiration from a Teenage KetoKid

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Thanks to the Charlie Foundation for sharing this amazing video made by a teenage keto kid. And thanks for sharing, Emily. You are an inspiration.

This is especially timely for us, as we are contemplating the idea that Nora might be on long-term diet therapy of some kind. But seeing other Emily’s video about traveling, smuggling her food into concerts, working in restaurants, applying to 15 colleges across the country (or so, I lost count)… I see that Nora’s future is no different from any other bright young girl who lives life to the fullest.

I also wonder what Nora would say if we turned on the video camera and asked her about her diet. Hmmmm, stay tuned.

Four-month Keto-Clinic Checkup

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On Friday, Nora and I traveled up to Doernbecher Children’s Hospital in Portland for her 4-month check up. We had been doing 3-month visits, but with her successful treatment Dr. Wray suggested that we spread out the check-ups a bit more. I am sure that Nora is happy to have 3 blood draws per year rather than 4.

Her labs looked good, except for some crystals forming in her urine, which can be a precursor to kidney stones. Ouch. That doesn’t mean that she will ever have a kidney stone, but the lab result led Dr. Wray to recommend precautionary steps. (1) We are increasing her to Cytra-K packets to 3 per day, up from 2 per day. The potassium citrate solution is primarily prescribed to combat blood acidosis, but it also prevents kidney stones from forming (which seems to be a very common use of Cytra for other illnesses). (2) Hydration! On the day that she gave a urine sample, she didn’t pee between 7 am (when she got up) and 2 pm (when I got home from work), even though she had water with lunch and snacks. Her pee was…ick. So pushing the liquids will also help to keep everything more dilute and moving through so that crystals can’t form.

Dr. Wray ran her through all of the regular gross motor checks–muscle tone, running gait, jumping, touch her nose, touch Foxy’s nose, etc. Everything looked good.

Nora’s been growing and on some days she’s starving, so I only increase her protein and fat to maintain the ratio while giving her 1250-1300 calories. So at this appointment I asked Karrie, her dietician, for the carb-protein-fat break downs for a 1300 calorie diet and a 1350 calorie diet. Taking Nora’s current breakdown that gives her 10 g of carbs per day on 1200 calories and scaling that up, Karrie calculated that she could have a max of 17 g of carbs! I had to say thanks, but no thanks. That’s a 70% increase in her daily carbs, and although the math says it should be fine, I’m not comfortable going there right now. Karrie re-calculated for 11-12 g of carbs per day, a 10-20% increase. It’s still a teeny amount of carbs, but now that I’m so used to serving 10 g of carbs per day, this will seem like such a luxury! That’s 16 more grams of blueberries–about 8 more whole blueberries! That’s huge!

After seeing how wonderful Nora is still doing, Dr. Wray again suggested that we could try decreasing her ratio if 3.5:1 is a struggle. He thinks there is a good chance that she will be fine on a lower ratio. But she’s happy with her diet, we have our happy little rut, so I’m not tempting fate by changing anything now. She’s over 1 year on diet therapy and 9 months seizure free. We’ll keep moving toward the 2 year mark for as long as Nora is happy. We had her packed lunch with us, so she showed off her Gelatine Cytra Heart and her Fiber Roll that she was going to eat with almond butter and her mixed berry jam. A real kid meal.

The last time we met with Dr. Wray was just after I had returned from the Charlie Foundation Conference last September. At that time I brought up the possibility of testing her for the GLUT1 mutation, which creates a problem with taking up glucose from the blood into the cells for energy use. Nora didn’t have typical symptoms of a GLUT1 kid (in the extreme, seizures come soon after birth), but there was something about the presentation at the Charlie Foundation that made me think of her, and made me bring it up with Dr. Wray (honestly, I’d have to look back at my notes to remember what it was that was similar. I’m not an expert). The other reason to check for GLUT1 is that people with a GLUT1 deficiency have to be on a special Atkins-like diet at least until maturity or for life because of that metabolic disfunction. If there is any chance that Nora has the GLUT1 mutation, we would want to know because she would never fully wean off of the diet.

Dr. Wray brought up the GLUT1 possibility again on Friday, as he did more research on it after our last visit. One good diagnostic tool is the blood sugar levels measured during a spinal tap. After Nora’s first seizure they did a spinal tap to rule out meningitis. Dr. Wray was able to look back at those records and see that her glucose level was normal then. But he said that both the spinal tap test and the genetic test are now recommended because some people have been found with normal glucose levels and the mutation, and vice-versa. Both tests are necessary for a definitive diagnosis.

Therefore, the next time Nora has her blood drawn they will do the GLUT1 genetic test. Another avenue to explore and more information never hurts. It’s not a big rush because her current treatment is the same with either result. The diet is the very best way to treat a GLUT1 deficiency. In addition, he said that we may not have seen some of the movement disorder/developmental problems with Nora because we had her on the diet (relatively) soon after her epilepsy started, so her brain has been getting the fuel it needs to development normally all this time. Yay diet!

Even while we have great success with the diet treatment now, it is still important to us and for Nora to understand the underlying cause of her epilepsy and why the diet is working so well for her. It matters for her long-term prognosis with or without the diet. It’s also important to us that Nora’s experience can help others. We’ve heard of other kids, particularly girls I think, that have similar epilepsy stories of seemingly benign myoclonic epilepsy. If we can help put some of those pieces together the doctors and researchers might be able to find the common links and understand what’s going on for these kids.

Dr. Wray also suggested that Nora could benefit from a more Modified Atkins-style diet for life, even if she doesn’t have a GLUT1 deficiency. If her brain is functioning better on ketones today, that’s probably only going to change a little over time. It’s not like she will be able to pig out on cupcakes and sugar cookies the day after we wean her from the diet. I certainly appreciate having a long-term view to prepare mentally and emotionally for the school days on a modified diet.

Re-Purposing Recipes

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“I have so much energy, I could lift a butter truck!”

~Nora, on why she doesn’t need to eat breakfast.

We’ve been sticking mostly with the tried-and-true recipes lately, but wanted to share some innovations, some of which are Nora’s imaginative re-purposing of recipes.

Snickerdoodle Cereal

The snickerdoodle recipe was a hit, but I made a few big batches and Nora started to get bored with them. One day she was eating snickerdoodles as part of a bigger snack that also included steamed cream, so she dipped her cookies in her “milk.” Eventually, she ended up crumbling a lot of the cookie into the cream and needed a spoon–cereal was born!

It was a happy discovery because we were almost out of the pumpkin cheesecake bars that Nora had been happily eating for breakfast for many weeks. With the snickerdoodle cereal and milk, I could put off more baking for another week.

Because the snickerdoodles are already 3.5:1, adding cream meant that we had to add more carbs or protein to make a 3.5:1 breakfast. Enter another Nora favorite: blueberries! One breakfast consists of 3 snickerdoodles, 5 g (1 tsp) heavy cream mixed with a few tablespoons of water to make “milk,” and 4.5 g blueberries (around 4 very small).

Mac-and-Cheese

As crazy as it sounds, I had a hard time consistently making mac-and-cheese that was the right consistency. But finally, I have mastered it! Nora ate her mac-and-cheese several days per week in the last few weeks because she kept demanding it, and it’s a quick and easy meal when there is a package of Miracle Noodles in the fridge.

I came across Miracle Noodles somewhere near the beginning of starting the ketogenic diet, but they weren’t a big hit right away. They are quite chewy, a little tough for little teeth to easily bite through. I’ve learned that I need to cut them with a kitchen scissors as I weigh them or after they are in the bowl so that they are in smaller bits. They are made of a Japanese root vegetable that is pretty much all fiber (the Ketocalculator has the values per gram, only 0.0028 g carbs per gram noodles). Because they are basically nothing but fiber for the purposes of calculating a meal, it’s great to be able to serve red pepper, avocado, flacker and other nice healthy things on the side.

To make mac-and-cheese, take 12 g to 15 g of shredded cheddar and put it in a small bowl with 1 T to 2 T (15-30 g) of cream and microwave for 30 seconds, then stir until smooth. I’ve got ranges here because the exact amounts don’t matter too much for the outcome, but sometimes I add more or less when I’m balancing a meal for Nora. If she needs more fat with her meal, she gets 2 T of cream in her mac-and-cheese. If she needs more protein, then more cheddar.

Weigh and cut 20 g to 25 g of Miracle Noodles, the vermicelli variety, into a separate small bowl and microwave for 10 seconds, just to warm up. Dump into hot cheese sauce and stir well. Cool and serve.

Anders is thrilled with this development because he has been eating more mac-and-cheese too. He has been put in charge of making it for himself, because he also eats the entire box by himself.

Bacon Pancakes! Making Bacon Pancakes!

This was inspired by a favorite cartoon, Adventure Time! Nora’s bacon is going on to her Keto-Krepes. Except that while I was cooking it, she actually decided that she wanted her bacon in a “pile” instead of in her pancake. So there you have it.

The rest of us had some bacon pancakes. And some piles of bacon. The best of all worlds.

They were totally math, asymptotically to the max!