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.

The Latest Daily Routine

As we have said before, we’ve really been learning-as-we-go with this diet business. Our daily meal routine has evolved, so I thought I would post our current methods.

During the first few months of the diet, we used a paper and pencil method. We had a small spreadsheet of commonly used foods and their break downs hanging on the fridge and would look up other foods as needed. Each meal was built on the fly with benchmarks for carbs, protein and fat at various times of the day. I knew the breakdowns for typical portions of common foods, so I could build a meal intuitively then add it up, adjust, and check the exact ratio. Each meal was juggled independently. It worked fine and provided us with flexibility, but after the last seizure (11 weeks ago!) and meeting with the dietician we started a more efficient long-term method for meal planning.

Snapshot of the KetoCalculator for meal planning

I first saw the KetoCalculator tool and started an account for Nora a few months ago when I met with Nora’s dietician to tighten up the way we administered her diet. I was reluctant to use it because only particular major brands of foods are available (for more on my reluctance, see About the MKD). But I also learned that the dietician must add all of the foods made from my recipes, and that just seemed like too much work for her and for me.   So we only use the official KetoCalculator as a reference to check the official break-downs for particular foods when necessary, but not as a meal planning tool.

Instead of the official KetoCalculator, Ted devised our very own KetoSheet spreadsheet in Excel. It’s the same idea as the official online tool, but we can customize and adjust it ourselves. We share it with each other via GoogleDocs so that we can both use the most updated version on our own computer, anytime. This lets us enter the number of grams for each food, see the breakdowns, the running total, and make slight adjustments to hit the right ratio for each meal.

Our shared Excel KetoCalculator showing my next plan for breakfast and morning snack, with running totals in yellow at the bottom.

It’s interesting to play with it to build a meal–we can move the ratio with tiny adjustments, like an extra gram of butter or one less gram of raspberries. Making slight adjustments to the paper and pencil method meals meant erasing, re-writing and re-adding. When we adjusted her ratio to 3.5:1, up from 3:1, I realized that I had a great intuitive sense for meals built at the 3:1 ratio. Changing the ratio meant a lot more time fussing over the right measurements for each food. It has really streamlined the process and I think it has helped Ted build meals from scratch as well. We share the meal planning load more evenly now.

After determining what Nora will eat at her next meal with our personal Excel KetoSheet, we write these values down in our little book-o-days. We now have four little notebooks sitting on the shelf full of daily meal records. That’s our permanent running log of Nora’s meals. It’s also far more portable than a laptop. Then we take the little book with the foods and quantities to the kitchen for quick reference when building a meal. We can also look back to previous days and copy a meal for a quicker process.

Gram scale and daily meal record notebook.

Next to the kitchen! We finally got a one-tenth gram scale and are very happy with it. I was afraid that I would spend a lot of time shaving off bits of food to hit the tenth-gram value, but it’s not too fussy. It’s actually kind of fun, especially when you hit it on the first try. There’s a silver lining.

With the meal plan and scale at the ready, we make up the meal. We have several small bowls, some of them silicone for easy mixing and scraping out of things like butter and cream cheese. I also have a few tiny bowls for presenting small amounts of food.

It’s all pretty routine now, but it still takes at least an hour or two to feed Nora each day.

We have a few standard breakfast combinations. The best one at the moment is a pecan breakfast cookie adapted from the KetoCookbook. The original uses ground pecans and butter, but I substituted coconut oil so that we do not have to present coconut oil separately in the meal. Nora doesn’t particularly like eating coconut oil straight or mixed in cream cheese. My next version will be made with hazelnut flour because Bob’s Red Mill has a pre-ground hazelnut flour, so I won’t have to grind the nuts myself.

Nora’s mid-morning snack is B^3 with either 8 grams of apple slivers or 15 g of baby carrots (depending on whether Anders has decimated our apple supply without our knowledge). Nobody better mess with her morning snack. She has come to expect it every day.

Typical lunch and snack: Tuna salad, flacker, cinna-butter, strawberry, avocado, macadamia nuts, and a PBJ muffin. Cytra (the solution to reduce her blood acid level) to drink.

Lunch varies. We have started using more macadamia nuts lately to help boost the ratio with healthy fats. We have also started to rely on butter much more than cream. Lunch always includes flacker and butter, which Nora eats up happily. We also have plentiful raspberries from our garden this time of year, so she eats several small portions of raspberries per day, usually around 10 g each, or 3-4 berries (only 0.57 carbs per serving!). I know, it sounds like so little to the rest of those, but those raspberries are precious sweet rubies to Nora.

On days when we both work, we put together the morning snack, lunch, and afternoon snack for her babysitter. We calculate, weigh and assemble it the night before so that it’s all ready to go.

Dinner and bedtime snack are calculated based on the running total for the day and the foods we have available. There are plenty of food options so we can always put together and easy meal. Or we can easily add something new to our KetoSheet if the rest of us are having something that we don’t often eat. Recently I’ve added pork shoulder, bratwurst, ling code and snap peas, edamame and watermelon to the KetoSheet. I look up values of generic foods on www.caloriecount.com and cross reference it with the official online KetoCalculator if I have any doubts. I create a new line in our spreadsheet and copy and past the formatting from an existing line. Then I add the new food and calculate the carbs, protein, fat and fiber per gram. Bingo-bango, I’ve got a new food to play with. Who says we shouldn’t play with our food?!?

Doctoring Updates

This is a big doctoring week for Nora. First thing yesterday morning, Ted took her in for her 6-month fasting blood draw to be sure that her body is tolerating the diet well. Having done this a few times now, we know that there are a few people at the lab who are able to get her little tiny veins the first time. That saves a lot of time and misery, but she is so brave and such a good sport.

Right after her blood draw, I took her to her regular pediatrician for her 4-year check up. She’s right on in her growth and development–about 78th percentile height and 72nd weight, healthy BMI. She’s growing as expected; the doctor did not think that the diet has impacted her growth at all so far. Chatty Miss Nora charms everyone with her observations about everything around her. She was also able to do the eye test by reading the letters on the chart!

The lab also needed a urine sample but was not able to get one when Ted had her in for the blood draw, so I was able to catch one after the doctor’s appointment and take it up to the lab on the same trip. As we were on our way out, a lab-coated young man chased after us and asked us to come back for one last thing. The tech made a mistake when doing the first blood draw, and they needed a little more blood to do one more test. Boo. There is one tech who has formed a sweet bond with Nora and chatted her up while they prepped everything. It wasn’t until the needle was about to go in that Nora realized that they were going to poke her again. The super-skilled tech was able to get her vein on the first try and finish it up. He mentioned that there were some rare tests in the order so he mis-calculated the number of vials of blood they needed, as different tests go out to different labs.

As we were packing up I told the techs about Nora’s condition, the diet, and the reason for her many blood tests. They thanked me for sharing and were so happy that she is doing well now. It must be tough for them to see little people come in for big blood tests and have to guess at why they are there, especially when they are so sweet and form a bond with their repeat customers–I am sure they are trained not to ask about medical issues.

Nora was a super champ through it all. She went home with an extra Barbie bandaid for later, another blue tourniquet (seat belts for her babies), and another squishy purple latex glove filled with water. She also told everyone she met that she wants to be a doctor when she grows up. That would be fabulous.

Next we are off to see Dr. Wray at the Keto Clinic at Doernbecher Children’s Hospital in Portland on Friday for a check-up and to go over the blood test results. Nora adores Dr. Wray and keeps asking when she gets to go see him. We will also bring Anders this time and plan to get some fun in on this trip, possibly going to the zoo or OMSI.

Back to our Local Ocean!

Corvallis is a fabulous place to live. Then add the ability to drive to the Oregon coast in 1 hour, or hike in the coast range or the Cascade mountains on a day trip, and it’s darn near the best place to live in the country, in our opinion. One of our favorite ways to beat the summer heat (for the few days that it visits us in Corvallis) is to go to the coast, which is guaranteed to be 20 degrees cooler. But a coast trip is a good idea any time to play on the beach, hike, eat some seafood and ice cream…although that has all changed during these 6 months on the diet.

Although this picture is 2 years old, it is Nora's typical beach performance art. She has a primal sand worshiping instinct, particularly after sunscreen is applied..

Our family tradition has been to stop by Local Ocean for dinner on our way home from the beach, then let the kids fall asleep in the car. But we have avoided a coast trip with Nora until today because we weren’t ready to navigate real restaurant eating on the diet. Anders MUST have the fish and chips and Nora ALWAYS had the crab cakes. It’s a given that she can’t order the crab cakes on the diet, so we needed another plan.

Our day started with the usual beach packing: extra clothes, beach toys, sunscreen. While Ted was gathering those supplies, I was preparing Nora’s food. I baked a few items, like PBJ cookies, that are a delicious self-contained 3.5:1 ratio, for easy snacking on demand. I also packed cheddar crackers, which is another recipe from the Keto Cookbook that is a 4:1 ratio. I promise to post a round-up of tested Keto Cookbook recipes soon. Lunch was packed in her lunch box for the car ride. Snacks packed separately for later. Dinner portions that we were bringing in a small cooler with ice for later.

I calculated dinner knowing that we would visit Local Ocean. After looking at the menu online and thinking through the options, I decided that crab was the safest choice. They have cooked crab meat at the fish counter and whole crab on the menu. I also thought that it might deflect Nora’s desire to have crab cakes if she stated her preference. I calculated everything that she would eat and tried to allot her as much crab as possible in the meal, which ended up being 30 g, or a little less than 2 legs from the dungeness crab, small guys caught right in the Newport bay. We ordered the 1/2 crab; market price, $19, wowza. Talk about luxury diet. I sacrificed myself and shared it with Nora, along with a cup of soup, instead of ordering a meal. Woe is me! 🙂

Nora holds her prize: the clawed crab leg at Local Ocean!

We told the waitress when we ordered that Nora had a special diet for epilepsy treatment and that we brought some food from home. As I expected, she said that their policy does not allow outside food, but she asked the chef and they decided it was alright. We were prepared to take our order to-go and sit out on the bayfront if necessary, but it was a cool and cloudy day and we preferred to eat indoors. I would hope that all restaurants are as accommodating when parents explain the situation, but I do understand that they are operating under the health code guidelines. I made a point of thanking the waitress when we were leaving and she shared that her nephew has epilepsy which is controlled with medication, but that he also cannot drink soda or other sugary things. I found that very interesting, possibly through trial and observations other epileptics notice that smaller diet changes can affect their seizure control. Anyone else aware of this? Do doctors discuss this with patients? We had not heard anything about it until we started researching explicit diet treatments.

And, wouldn’t you know it, she dropped a big chunk of her pre-weighed butter on the floor while she was eating. We had our scale along for measuring her crab, so we measured the lost bit and asked the waitress if she could bring a pat of butter. They don’t keep packaged pats of butter on hand and only serve garlic butter, but she was able to locate a block of frozen butter and cut off a bit for us. We are so thankful for her understanding and resourcefulness. Now we like Local Ocean even more!

Nora enjoying her homemade crab cake, al fresco. Yes, she dressed herself. And yes, those are leg warmers on her arms. It was her rebellion against my suggestion that she put on a jacket in the morning before we left.

And knowing that Nora likes crab cakes, I have twice made the crab cake recipe from the Keto Cookbook.

The first time I didn’t follow the cooking procedure as directed. I simply mixed the egg whites with the crab (I did use the canned fancy white lump crab meat suggested by the recipe, but could calculate it with fresh cooked local crab as well). I put it in the skillet and formed it into a patty while the egg cooked. The kids went crazy for those crab cakes! I will be making them often. Anders generally eats the same main dish as Nora, as do the rest of us if appropriate (I can’t eat much egg, so this recipe is out for me). It’s a good way to test whether a recipe has staying power, simplifies dinnertime, and helps Nora feel included. The rest of us just don’t add the extra butter or cream to our meal, and we add more veggies.

The second time I followed the recipe’s procedure. I used “Just Whites” powdered egg white (they should go back to marketing and re-consider that product name), whipped the egg whites into stiff peaks, folded in the oil and crab, then fried it in patties. It held together better while going into the pan, but it poofed up then fell as the air came out during frying. They ended up as flat oily slabs. Nora still devoured it, but Anders preferred my “mistake” method and I would have to agree. I also tried using the ring portion of a mason jar lid as a mold in the skillet to maintain the shape. That will be a good strategy going forward with the un-whipped egg whites, but I will oil the ring well to keep the crab cake from sticking to it.

The crab cake recipe is quite simple, as adapted from the Keto Cookbook.

Nutrition information for Crab Cakes. Analysis from www.caloriecount.com

Crab Cakes
20 g Crown Prince Fancy Natural Crab Meat
15 g egg whites
9 g olive oil

Mix together and fry in oiled skillet on medium-high heat.

Makes 1 crab cake, 44 g. The portion in the Keto Cookbook is too big for Nora, so I scaled it down. This is a 2.3:1 ratio, so round out the meal with other sides to achieve the desired ratio for the meal. Our family is not at all fond of mayo, so Nora generally will have plenty of butter on a flacker or her high-fiber tortillas to boost her fat for the meal.

Nora’s Birthday! Raspberry cheesecake, cupcakes and frosting!

Just after spring officially turned to summer, we celebrated Nora’s 4th birthday. Everything has been going well for Nora these past few weeks and we are all transitioning into summer mode.

Nora’s birthday morning started with an experimental special treat: Cytra jello. I’m not a jello fan myself, and I doubt that I have ever made it at our house, but my kids immediately recognized it. Remember that Cytra is the supplement she takes to counteract the blood acidosis that tends to occur on the diet. It’s sweetened with saccharine and colored with red dye #3. Sounds like the perfect match with gelatine, right?

Nora's Cytra Jello Heart

I bought some plain unflavored gelatine because I saw it in several keto-recipe ideas, so I thought I would have some on hand. On the back of the package was their super simple cheesecake recipe, which I decided to use later (see below). The idea was born to sweeten the cheesecake with Cytra, as she takes Cytra everyday anyway. I made a 1/2 portion of the cheesecake, which required mixing a full package of gelatine with Cytra, then using only 1/2 of the mixture for the 1/2 cheesecake. That left me with 1/2 portion of Cytra + gelatine and–ta da! Cytra jello was born, shaped in 2 heart silicone molds. It was a hit and I have had requests for more Cytra jello.

Gelatine has 2 g of protein per envelope, so each heart contained 0.5 g protein, no carbs or fat.

Nora shares a birthday with her buddy Ian, who is 1 year older. Ian’s family invited us over for a birthday buddy celebration. They were very thoughtful to call with the menu so that we could plan Nora’s dinner. She had her first taste of watermelon on the diet (16 g! 3 tiny chunks!), along with hot dog, avocado, and other normal dinner foods. For dessert they made a raspberry cheesecake, a treat that is relatively easy to turn into a keto-friendly dessert.

I made a keto-pumpkin cheesecake recipe last fall, but the texture didn’t quite fit the bill and I wanted a cheesecake that would hold up to a raspberry sauce on top. I looked at other keto-parent blogs and thought I had found a winner, until I serendipitously happened upon the back of the gelatin box, where I found their “It’s-A-Snap Cheesecake” recipe. The ingredient list was so simple that it was almost perfect without modifications, and because it was no-bake I didn’t have to gamble with texture outcomes by adding more fat. With all of the other birthday prep I was ready for simple.

Nutrition information for 1 serving of No-Bake Raspberry Cheesecake. Nutrition information from www.caloriecount.com. 8 servings.

No-Bake Raspberry Cheesecake
(8 servings)
1 envelope Knox unflavored gelatine
1 cup boiling water
336 g (12 oz) Primrose cream cheese (re-calculate nutrition with your brand)
113.4 g (4 oz) English Double Devon Cream
1 tsp pure vanilla extract
120 g raspberries

Mix gelatine into 1 cup boiling water, adding any no-carb sweetener to your taste (or equivalent to 1/2 c sugar. We used 1/2 Cytra packet.). Stir until gelatine completely dissolves, about 5 minutes.

Beat together cream cheese, double devon cream, and vanilla in a large bowl with mixer until smooth. Slowly beat in gelatine mixture.

Pour into shallow glass dish and refrigerate until firm, about 3 hours.

Nora at the end of the table with her cheesecake, and b-day buddy Ian with candles on the big cheesecake!

Raspberries can be used fresh on the top, mashed and cooked down, or cooked down from frozen. We also added a bit of Cytra for sweetness as well. Next time I might try to add some gelatine to the raspberries then pour over the firm cheesecake, so that each serving is more equally distributed. Just remember to count the gelatine in the recipe, as it adds protein.

 

Makes 8 servings with nutritional information in side panel.

(click on pictures to enlarge)

Nora dug into her cheesecake and loved it! She was almost done with her generous piece before the rest of us got our cheesecake in front of us. Then it was so great, she licked the plate! She was allotted every one of those carbs, so she can get them into her any way she knows how.

I am not a fan of the no-bake cheesecake, so next time I have the energy I will try the more traditional version adopted from another keto-parent blog.

(click on pictures to enlarge)

I am sure that all keto-parents spend an inordinate amount of time preparing for special events because special events are always bound up with special foods. Now that we have our keto-kid as the center of her special event, my goal was to showcase her special food for all of her special people at her birthday party for her friends. My hope was to make her feel normal for a time. When we talked about cupcakes, she said, “do you mean I’m not on my diet anymore?!?” But this time I said, “no honey, you are still on your diet, but now everyone will get to share your special foods!” Although we still had whiny requests for another cupcake, that’s normal. There were no tears today because she had a cupcake that looked the same as everyone else’s cupcake. Little did she know that hers tasted just a little different.

When I made cupcakes for the party, I started by making a double batch of Nora’s Raspberry-Coconut Cupcake batter. I weighed out 6 cupcakes for Nora and baked them up in the special princess cupcake liners that she picked out. Then I added a little sugar back to the batter and cooked up cupcakes for everyone else, in different cupcake liners. Wow, it goes so fast when you don’t have to weigh the batter that goes into every cupcake!

I used the same procedure to make the frosting. First, mix it up perfectly according to the keto-version recipe and frost Nora’s cupcakes. Then mix some powdered sugar back into the rest of the frosting and do the rest. Although Nora’s cupcakes are pretty good on their own, other kids are accustomed to sweet cupcakes. I didn’t want other kids rejecting them for lack of sweetness. Actually, Anders rejected his because he thought it was too sweet! He has never had a sweet tooth (although he seems to be part fruit bat), and now that he doesn’t eat many sweetened foods he can taste the difference.

Many of Nora’s regular foods were on the menu: Hazelnut-Applesauce Mini-Muffins (baked into 16 g mini-muffin liners–that batter works great for measuring), Flackers, cheddar cheese, string cheese, rotolini, PBJ muffins (without added butter for everyone else), raspberries, mini-peppers, seaweed snacks, Macadamia Monster Mash, avocado, carrots, celery, cream cheese, and turkey/ham/cream cheese roll-ups (although I made those on standard tortillas because Nora was not having any, and her low-carb tortillas are expensive!) We pre-measured Nora’s lunch and brought it ready to put on her plate.

The theme was a fancy tea party luncheon, so I bought some mismatched fancy tea cups at a second-hand store along with some linen napkins and doilies. I had a fancy lace tablecloth from home that we put on the picnic table at the park. It looked to be a fancy affair, but it was the best of all worlds–fancy kids, fancy dishes, fancy food, and all fun and games at the park!

The pink cupcakes were also a hit. I found some sparkly pink sprinkles made from gum arabic and food coloring, rather than sugar. My research indicated that gum arabic is almost entirely fiber, so it should have no impact on her diet. I sure hope so. I put just a bit of sprinkles on top of her cupcake. So cute, but not sweet.

I realized at the beginning of the party that we had candles but not matches! Of course, none of us smoke and had no easy way to make fire. It was also fairly windy, so instead of running home for matches we piled on several fancy toothpicks with a crown and a few fairies. Nora asked about the candles but quickly got over it and dug into the cupcake!

Nutrition information for 1 Raspberry-Coconut Muffin. Recipe makes 18 servings. Analysis from www.caloriecount.com

Raspberry-Coconut Cupcakes
(makes 18 cupcakes)
56 g Bob’s Red Mill Organic Coconut Flour
1 tsp baking powder
1/2 tsp salt
84 g European-style butter
300 g (6 large) eggs
1 tsp vanilla extract
60 g Thai Kitchen Organic Premium Coconut Milk
1/8 c water
36 g raspberries

Preheat the oven to 200C/400F degrees.
Combine the coconut flour, baking powder and salt.
In another bowl, mix the butter with a hand mixer until fluffy, then add the eggs, vanilla extract and coconut milk and mix until well combined. Add water after the mixture begins to thicken. Let rest to allow the coconut flour to absorb all the liquid.
Add the dry mixture to the wet and blend well.
Spoon 30 g batter  into regular cupcake liners or silicone molds.
Push 2 g of broken up raspberries into each cupcake.
Bake for 15-20 minutes until firm.

Nutrition information for 20 g of Raspberry Cream Cheese Frosting. Analysis by www.caloriecount.com

Raspberry Cream Cheese Frosting
(Makes 10 servings of 20 g each)
30 g Thai Kitchen Organic Premium Coconut Milk
88 g Primrose cream cheese (substitute your brand and re-calculate)
71 g European-style butter
8 g raspberries

Blend all ingredients until smooth. I wanted to put 20 g of frosting on each cupcake, so I took my recipe and adjusted the number of servings to get 20 g each. If you divided this on to 18 cupcakes, it would be 11 g of frosting each. You can adjust as you like. The nutrition information is for 10 servings of 20 g each.

The cupcake with 20 g of frosting has a ratio of 2.96:1. With a 1/2 tablespoon of cream with tea, it’s perfect for Nora, at a 3.53:1 ratio (she’s at 3.5:1).

We found this fabulous 3-tier cupcake display that captures the spirit of Nora. If you can’t quite read it: “I am fairly certain that given a cape and a nice tiara, I could save the world.” With the cool pig-tailed girl riding her bike with her legs flying out! That’s our Nora (except maybe she would say, “I could RULE the world!”).

Guess How Much I Love Nora

So much that everything is now heart shaped. Awwww.

Freezing 5 g of coconut oil per heart. We have been measuring 5 g of coconut oil, 3 times per day, for weeks now. Time to do batches!

(above) Baking perfect portions of Nora’s new Pecan Breakfast Cookies, adapted from the Keto Cookbook.

Cookies = Love

 

 

 

 

 

 

(below) Nora enjoying her newest baked goods.

 

 

 

New Keto Resources & PBJ Muffins

One month ago, I was in Portland and met with Nora’s dietician. Afterward, this analogy came to mind:

Your family is driving in a remote forested area when your car breaks down. It’s cold, you don’t have much food, you don’t have cell phone reception and you have not seen signs of civilization. But you survive. You stay together. You ration your food. You start to burn your tires for warmth. Eventually you get desperate and one of your party strikes out to find help. After only a few hours, your emissary triumphantly returns to tell you that there is a Super 8 motel right over the ridge. Not great digs, but it’s food and shelter!

Now, that is a touch dramatic, but going into the keto diet was a bit like being lost in the woods. We have been doing pretty damn well, if I do say so myself. But that day in Portland, I learned so many details from the dietician that were never communicated to us. Better yet, I found out about The Keto Cookbook. It is written by a parent and a dietician, with form letters for daycare, emergency room/hospital visits and TSA (not that I plan to fly with Nora anytime soon)! Best of all, it is full of beautiful photos of the lovely recipes, all 4:1 ratio meals. This morning Nora and I browsed the pictures of all of the wonderful foods she could have on her diet. Many of the recipes are similar to things that I already make, and more than a few will probably not be appealing to her at the table, but just the chance for Nora feel like her diet was fabulously on display for her perusal was worth the $20.

How did we get lost in the woods? Nora’s dietician and I had that conversation during my visit. We went into the diet kind of “backward.” We tried less restrictive forms of diet therapy first. We experimented with feeding her Low Glycemic Index foods on our own before things got really bad. After the November hospitalization for the 24-hour EEG, we decided to try the Modified Atkins Diet before the Keto diet. Then we found that as we increased her fat ratio, she had better seizure control. We also found that we lost seizure control if her carbs were not carefully distributed throughout the day. So we inched closer to the keto diet by finding out what worked best for Nora. What we found out that the traditional keto diet works very well for Nora, although she still gets good seizure control at a lower ratio and a little more relaxed schedule. Because we eased into it, we didn’t have the hospitalized diet initiation that is standard procedure, so we did not have a full keto training as most families do. We learned on our own as we went, but that meant we were out on our own, unsure of even the questions to ask sometimes. It was not until after the last breakthrough seizures (going on 6 weeks ago!) that we talked about inching even closer to the traditional Keto diet and learning about the gaps in our knowledge.

But things have been going well, so a month passed between my last meeting with the dietician and finally ordering the Keto Cookbook. In that month, we have wrestled with adding other supplements like carnitine and dealing with the blood acidification issue. Now that we were getting comfortable again in a routine that works, I guess I had the energy to try new recipes and resources.

The Keto Cookbook is a great resource, but it’s not the Ritz. I started by reading and implementing their section on kitchen tips and tools to make life easier. We have a lot of the necessary equipment already, but not everything. I had resisted getting silicon bakeware until now because it just kinda creeped me out. Today we had a big shopping trip and I went all out–silicone muffin cups, more little rubber spatulas and pinch bowls, and yes, a teddy bear pancake pan. Anything to make cooking easy or food appealing and fun. Nora and I spent most of the day on my bike going to stores to find the things we wanted, and she got to help pick out the shapes and colors that would hold her food.

The 2-person paper muffin cup technique.

I used the muffin cups today and was quite pleased. Silicone cookware has a few real benefits for the keto diet. It does not absorb fat or liquid, so the amounts that are measured and cooked end up in the food, then in the kid. They are also rigid, so I can put each muffin container on the scale, tare it, and fill it with the correct amount of batter. Every muffin will be the same. Cora and I tried to accomplish that with paper muffin liners recently, with marginal and at times hilarious results. She had the idea to use a pastry bag to fill the muffin liners, but the liners were not strong enough to hold the batter alone on the scale. She would put a liner on the scale and spot it while I filled it to the right weight, then she would deftly transfer it to the muffin tin. We lost a few and it was incredibly labor and time intensive. The silicone is going to save a lot of time and effort. It already has.

Today I made Nora the “PBJ Cookies” recipe from the Keto Cookbook, and learned a thing or two about how to use the book.

First, I still had to enter the recipe into the online recipe analyzer that I use. The cookbook assumes a 4:1 ratio and reports only the calories and carb content of the recipe. I would have to go through some algebraic gymnastics to calculate the protein and fat content of the recipe, although it could be done with the known information. Nora is also on a 3.5:1 ratio, so I can adjust the recipe to reach her ratio. In addition, we use different brands of peanut butter and other products, so I have to use the nutrition information for  the ingredients that I will use. The cookbook gives me a good starting place, but it is not all done for me. That is also how the recipes on this blog should be used for other families. This is all a DIY guide.

I analyzed the PBJ cookie recipe last night, anticipating that I would make it today. Nora and I spent several hours biking around town on our cookware errands, and by the time we got home I was tired and she was ready for a snack. I put the recipe together and got it in the oven as fast as I could. Because the cookbook specifies individual meals and snacks, not batch-cooking, I assumed that I would give her the whole portion. I looked at my nutrition analysis, and it was and appropriate breakdown for a mid-day snack. What I forgot, in my haste, was that I specified 4 servings from the entire recipe in my online recipe analyzer. I forgot that the entire recipe made a 400 calorie meal, not a 100-150 calorie snack. Nora scarfed down all 3 PBJ cookies that I made, then I realized my mistake–instead of having about 1 g carb, she got 3 g carbs total! Luckily, that didn’t push her past 10 carbs for the day yet. It was more like she had an early dinner so everything was ok, but I had my moment of panic. I realized that I was relying on the book rather than thinking it out for myself and I was tired and in a hurry when I made and served her. No harm, no foul today, but a lesson to keep in mind.

The PBJ Cookie recipe was a hit, although the “cookie” was more like a muffin, topped with a peanut butter plus butter “frosting” and a few strawberry bits for the “jam.” I was able to make 2 more batches of the recipe, this time measuring the muffins into 4 equal portions so that they can be used as snacks. Here’s my take on the recipe, adapted from the Keto Cookbook.

1 PBJ Muffin with topping. Adapted from The Keto Cookbook. Nutrition analysis and information from www.caloriecount.com

PBJ Muffins

37 g egg (whip well first then measure)
20 g macadamia nuts, ground
11 g canola oil or walnut oil
5 g Bob’s red mill flaxseed meal
8 g Strauss European Butter
8 g Adams 100% Natural Peanut Butter
12 g strawberries

Measure the egg, ground macadamia nuts, oil and flaxseed meal. Mix well. Measure 18.5 g of batter into each of 4 muffin cups. Bake at 350 for 15-20 minutes.

Mix butter and peanut butter. Frost each cooled muffin with 4 g of the mixture.

Slice the strawberries into small pieces, placing 3 g of strawberry on each muffin.

Enjoy!

Each muffin has:
0.7 g net carbs
2.3 g protein
10.6 g fat
1 g fiber
3.53:1 ratio

If your child needs a higher ratio, increase the butter and decrease the strawberry per muffin until you reach the right ratio.

The Blood Acid Chronicles

This diet blog has been a little bit quiet lately, which is a good sign. It has been over 3 weeks since Nora’s last seizure. We’ve made some changes since then, so I thought it was time to catch up on some details now that we seem to be settled into a groove.

Nora plays library by creating a kind of rug-size book puzzle. I'm always amazing by what she can come up with when left to her own devices.

We have not fully explained the blood acid issues here–and I personally don’t understand blood chemistry issues completely, but I will do my best to explain. When Nora had her blood chemistry done over one month ago, they found that her blood was a little too acidic. If the blood gets too acid or too alkaline, any person can get sick. If it is too acid, we have been warned that she will get generalized symptoms like lethargy and vomiting. For a kid on a normal diet, parents would assume it is just a virus that will pass. If Nora gets sick and the blood acid issue is not treated, it is life threatening. Keto families learn that flu-like symptoms can be serious, and our doctor recently mentioned that getting a virus can push the blood acid issue farther and require hospitalization. It is something that we have to keep an eye on and control to avoid compounding problems.

High blood acidity is a normal side-effect of the keto diet because the fat is broken down into acid bodies that are then used for energy. In addition, she is getting valporic acid (Depokote). She’s got lots of acid-bodies running around in her bloodstream all the time. Some doctors automatically prescribe an alkaline solution with the diet to guard against acidosis. Our doctor waited until her blood tests showed mild acidosis (although she never got sick) so now we are giving her an alkaline solution to keep it in check (a bicarbonate is the ticket–such as baking soda–or something that breaks down into a bicarbonate, such as potassium or sodium citrate).

Getting the right solution proved tricky. The first prescription was for a potassium citrate solution that touted it’s “great cherry flavor.” Carbs! One solution had sucrose–a sugar. Not gonna work. Another version was sugar-free, but had sorbitol, a sugar alcohol, that does break down into a small amount of sugar in the body so it could be used for diabetics but was not appropriate for Nora. She can have 10 g of carbs per day, and the prescribed amount of the sorbitol solution was equivalent to about 4.5 g of carbs. Not worth the trade off. Thankfully I recognized the potential problems before giving her any of it and kept hounding the doctor’s office to find an alternative. Our pharmacy was very patient and helpful also. During this struggle to find an appropriate supplement (which was doubly bewildering because one would think that the doctor’s office would have figured this out by now), we were giving her 1/2 t of baking soda in water morning and night. It tastes terrible, but she took it like a champ and was rewarded with a frozen raspberry for her bravery.

Finally, the dieticians and pharmacy came up with Cytra-K, which is a packet of crystals mixed with water to make a fruit punch drink, sweetened with saccharine and colored with red dye #3. Sigh, not our favorite combination of artificial ingredients, but it is effectively no-carb and Nora adores it. Most of us survived years of daily Kool-Aid, right? We were afraid that the sweet taste would interfere with ketosis, but it has been no problem at all. Her first dose was 1 packet per day, mixed in the morning and divided up between breakfast and dinner.

I took her in for a blood test again this week (thankfully a finger prick, she is so very brave, and we ask for Ericka at the Corvallis Clinic lab who talks in a silly voice and adores Miss Nora). Her acid levels are still a bit too high, so now she is having 2 packets of Cytra-K per day. When Dr. Wray called to tell us to increase the dose, I told him that Nora would love him even more. She can’t get enough of it. I’ve started freezing a bit of her daily dose into icy-pops for an afternoon treat. He also thinks that she will not need another blood draw until we see him again in July.

Nora continues to thrive. I have been more anxious than ever lately, wondering what will happen next. But we remind ourselves that time is on our side. Every day that passes is another seizure free day, another day on the diet, another day of maturing and growing for Nora’s brain. We marvel at the slew of supplements that she gets to keep her body functioning properly on this knife-edge of hard ketosis. But without knowing our daily regimen, Nora is just another crazy-cool-almost-4-year-old kid, for which we are crazily thankful.

 

Diet and Treatment Update

As we reported last week, Nora had another tonic-clonic in the early morning hours of her sleep (boo). That makes 3 of these while on the diet, but the last 2 have NOT been followed by myoclonic seizures (yay).

Although seizure-freedom is the goal, we are realistic about the fact that seizures will still pop through. Each one poses the question: “What now?”

One option is to consider this the status-quo for the moment. Because the reality is that kids will continue to have breakthrough seizures until they die out for good. Some silly superstitious part of me had the idea that the end of this must be symmetrical to the beginning. She started out with 8 tonic-clonics before the myoclonics started. Now the myoclonics are done, and she will have 8 tonic-clonics before it is over. 3 down, 5 to go. Rationalization is a powerful thing.

On the other hand, we can look for more seizure control. Our first instinct is to move toward a stricter form of the diet. She has been on a 3:1 ratio (fats to carb+protein). The traditional keto diet starts out at 4:1, so we have some extra room to move if she needs even stronger ketosis. We also have not been focused on the perfect ratio for every meal during the day, opting to load a little more fat right away in the morning and before going to bed. We could try a more consistent ratio all day, as in the traditional keto diet.

This is all extra hard because the last time we saw her doctor, she was doing great and he said that he would wean her from the Depokote if she maintained seizure freedom for 2 more weeks. Her first tonic-clonic came right at that 2 week deadline, which was frustrating. But he said again that he would still consider weaning her … and then another seizure happened. After this third one, he said that his top recommendation would be to switch her to another drug. I was shocked. He told me the side effects of the drug options (one of which included myoclonics–geez), and we know the horror of weaning one drug and ramping up another. We talked through the combination of diet-drug options and all that we know about each, and he left the final choice to us about the next course of action. But still, I’m mystified by his recommendation. It plants so much doubt–in his judgment and our own. Doc, Ted and I should all be experts on Nora’s case by now. We all want these seizures to stop showing up. And it is disconcerting that we do not agree on the next course of action.

I also talked to Nora’s dietician, who did a good job at trouble-shooting the factors leading up to her seizure. Nora had built up a sleep deficit because she started giving up her nap. She was also a little constipated for a few days. She also had a little more carb than usual (very little, and barely breaking 10 g one day because we mis-recorded one food). The dietician was not too worried about it because she said that most kids have breakthrough seizures, but we can always try to do more to be consistent and help avoid them. She agreed with us that we could do more with the diet first to see if we can get better seizure control, so I feel more at peace with this decision.

We feel very strongly that continuing to tighten up Nora’s diet is the best course of action. We’ve started giving her a 3.5:1 ratio of fat to carbs+protein and being sure that her ratio is 3.5:1 after lunch and at bedtime. I am going to meet with the dietician this week and get some keto diet training and learn about their keto calculator program. Meanwhile, Ted has set up his own keto calculator spreadsheet to help more with meal planning. We will keep trying to find the easiest ways to make the diet more effective for Nora, and hopefully we will see the end of these tonic-clonics. Or maybe there will be 5 more to go. Rationalization is a powerful thing.

Tips on Heavy Cream

Nora goes through a lot of heavy cream. She has at least 1/4 cup every day, most of it as “hot cocoa” as a bedtime snack.

We heavily rely on it as a source of concentrated fat. But we have learned from our dietician that Organic Valley Heavy Cream has been the only brand that her patients have been able to consistently rely upon to get 6 g of fat per tablespoon and 0 g of carbs. Other brands often contain a bit of the lactose (sugar) that should be left behind after they separate the cream, but they report 0 carbs because they are allowed to round down.

In addition, an at home tip: We often find that the fat separates and clumps within the carton of heavy cream. Big chunks can be stuck to the side or floating, so the fat distribution is uneven for each serving. We have learned to pour the whole pint out into a glass mason jar and stir it well initially and before serving. This last week, we were not doing that. There were probably several nights when Nora was not getting the required amount of fat in her hot cocoa before bed. I really noticed it when I used the last of the cream to make the scones. The cream just looked thinner to me at the very end of the carton. Another opportunity for measurement error.

Details matter. My brain is too full of details.

Raspberry Scones

A labor of love. Emphasis on labor.

The ketogenic diet relies on a precise measurement of macronutrients. So any recipe that results in clumps of food, particularly carby food, is a bit dangerous. I worked very hard to make sure that each scone was uniform and consistent. I will describe my process and tell you what I learned about baking for my keto kid.

This recipe is adapted from Candice’s Low Carb Recipes (blog moved to new site 4/13): http://tmstrevival.wordpress.com/). She is a baker by trade and successfully lost weight with a low carb diet, which she continues. One general lesson I have learned is to take the process seriously. When it says to use frozen butter, use frozen butter, not softened butter. We are trying to re-create baked goods that are judged by their resemblance to their carby parentage. Sometimes it takes a little extra attention to detail to use materials with a vastly different make-up to make a high-quality product.

Raspberry scones

1/2 cup (56.8 g) Bob’s Red Mill Organic Coconut Flour, divided into 6 Tbsp and 2 Tbsp
1 tbsp (10 g) Golden Flaxseed (whole)
2 teaspoons (10 g) baking powder
1/4 teaspoon (1.5 g) salt
6 Tablespoons (85.2 g) unsalted butter
60 g unsweetened raspberries
3 large (150 g) eggs
1/3 cup (80 g) Organic Valley Heavy Whipping Cream
1 teaspoon (4.2 g) pure vanilla extract

In large bowl mix 6 Tablespoons of coconut flour, flax, baking powder and salt. Set aside.

In a small bowl mix cream, eggs, and vanilla with a fork until all combined. Set aside.

Cut in FROZEN butter into your coconut flour mixture using your hands or a pastry blender until a course meal texture. I broke my pastry knife some time ago and have not replaced it. I used one of my hand mixer beaters to squash the butter into the flour and also used my hands. You can see the size of my course mixture.

Slowly add *almost* all of your liquid egg and cream mixture either mixing with hands or fork. Mixture will be runny. Add your extra 2 Tablespoons of coconut flour now and mix until thickened. Let it sit for a few moments and it will thicken as the coconut oil absorbs the liquid.

I calculated the recipe with only the batter, not the berries, and came up with 400 g of batter. Therefore it could make 20 scones of 20 g of batter each. However, after weighing the dough for each scone, I only had enough to make 18 scones of 20 g of batter each.

With each 20 g of dough that I measured, I then measured in 3 g of raspberries. Now I had 23 g of raw scone material for each one.

Here is an example of one imprecise measurement that I encountered in the overall recipe. Because the recipe calls for mixing in almost all of the wet ingredients, some of the mass is left out of the dough. I felt confident that at least I knew how much was in each scone, particularly how much raspberries were in each scone.

Place each measured dough ball on a parchment paper lined baking sheet and put them in the freezer for 20 minutes.  Try to do this process rather quickly and efficiently, because you will want them to stay cold. Next form the dough into triangles. Nora knows that scones are typically triangle shaped, and presentation is as important as taste to her. After shaping, place dough in the freezer for 20 minutes again.

Preheat oven to 425F. Brush the scones with remaining liquid cream/egg mixture.
Bake for 15-20 minutes.

Let cool. Here’s the interesting food science part. Remember that I put 23 g of scone batter and berries into each one. When I weighed them after baking, they were 19 g each, and quite uniformly so. What happened? 4 g of steam came out during baking and cooling. That’s not very much water overall, but it matters when we are weighing and serving our keto kids, depending on how sensitive your kid is.

From all of this I learned that when I put my ingredients into the recipe analyzer, it simply smashes it all together and divides by the number of servings. It is very accurate for raw things, like B^3 and Macadamia Monster Mash. But it does not consider cooking and the loss of steam, and therefore the loss of mass. Note above that the nutrition label says it is a 23 g serving, but in the caption to the nutrition label I note that it is a 19 g scone. Tricky. I have not calculated this for my other baked recipes. For my purposes I think that they are close enough because we are not using the strictest version of the keto diet, but I plan to ask our dietician if they consider these things when they make recipes. Maybe it’s close enough that it is within the margin of error.

As hard as we try, there is measurement error in everything that we feed our kids. We weigh portions out, but we did not churn the milk into butter or determine the meat-to-fat ratio in that slice of bacon. We have to watch out for the places where large and significant measurement error could creep in, particularly in the carb department, like a scone that gets 6 g of raspberries and another that gets 2 g of raspberries if the recipe was made in the standard way of mixing and baking it all together, then cutting it up.

Now the important part: yum, these scones are good. They got the approval of Anders, his friend Henry, me, and Grandma Sheryl too. They are a great option for any low carb dieter or for someone who is gluten intolerant. Coconut flour is the magic ticket. Even without added sugar and non-sugar sweeteners, they are darn tasty. Nora eats them for breakfast with her 5 g coconut oil mixed with a teaspoon of butter.

On the emotional side, it seems to really help Nora when other people get to share some of her “special” foods. She was so happy when our friend Mara, who is gluten-intolerant, enjoyed the cupcakes that I made for Nora to eat at Anders’ birthday party (I will post that recipe sometime too–when I can do a controlled weighing like this again). She kept offering another one to Mara for the joy of sharing. It helps her to feel a little more normal, while we also remind her that almost everyone has their own food issues for different reasons. Mara can’t eat wheat, I can’t eat eggs, lots of people can’t eat peanut butter, or milk, or cheese, or yogurt. I guess we are all a little bit ~different~.