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?!?

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.

 

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.

The Virtues of Fiber

Fiber is our friend. It is counted as a carb on nutritional labels, but we can subtract it out of the “total carbs” to get effective “net carbs.” It lets Nora eat fabulous things like La Tortilla Factory’s Smart and Delicious Low Carb, High Fiber Tortillas. Nora eats some of these tortillas every day, either in 1/8 sections (4.5 g) or 1/4 sections (9 g). They are big, so that little part of a tortilla goes a long way. I know the nutritional specs by heart–1/4 of a tortilla has:
1.5 g net carbs
2 g protein
0.75 g fat
3 g fiber

Wowza. And they taste good, in addition to being quite sturdy. Nora eats them with her “cinnabutter” (butter mixed with a bit of cinnamon, sometimes also delivering coconut oil), as a quesadilla several times a week, as a pizza “crust,” and in our latest version, a “dogsadilla,” wrapped around a hot dog.

Fiber is also our friend for reasons that we all know and love: it gets the poop out. As we have learned the hard way, constipation = seizures. I don’t fully understand the technical explanation (it has to do with the vagus nerve), but our keto doctor says that it is extremely common, in addition to jiving with our experience.

And the keto diet is quite constipating. We’ve tried several things suggested by the dietician. Miralax is a gentle laxative, but we are wary and have not had great luck. We have given Nora a magnesium supplement called Calm that comes in a no-carb “lemonade” flavor, which helps to relax the muscle walls to ease the poop out. We have mixed the lemonade version with the unflavored version at a 2:1 ratio to get more supplement and less flavorings. Nora likes having something tasty to drink. We took a break from Calm supplements for awhile because of a separate acidity issue (more next week on that), but Nora seems a bit constipated again, and I’m wondering if the break from Calm is the culprit. We’ve started giving her 1 teaspoon mixed in water in the morning and 1 tsp in the evening again.

We also give her baths in epsom salts as a way to absorb more magnesium. Ted is a big fan of the epsom salt baths, and it’s darn nice for her.

Back to fiber. The last time she was constipated, we talked to the dietician about her fiber requirements. Looking back, it seems odd to me that they don’t make this part of the keto calculations. If constipation is a problem–let fiber do the job! More bulky yummy foods! Have your red peppers and avocados and raspberries and eat them too!

The dietician said that a rule of thumb for a child’s fiber requirements is to take the child’s age and add 5. So Nora needs 8 grams of fiber per day. We had started tracking it just before talking to the dietician, and she wasn’t too far away from that. Since then, we have tracked fiber along with her carbs, protein and fat. She normally gets 9-12 g of fiber per day now. But another thing to remember: Fiber bulks up the stuff passing out, so can be a constipation threat if you don’t drink enough water. So keep on the water requirements too.

Nutrition information for 1 Tbsp of Bob's Red Mill flaxseed meal.

Nora now eats several high-fiber fruits and veggies per day, and we pick up extra fiber in other ways, like her fabulous tortillas. As I mentioned in the B^3 post, I add flax meal to recipes to up the fiber content. I add some flax to almost everything I bake. The carbs in flax are purely fiber, so it adds nothing to the carb count, only to fiber, protein and fat. In addition, it has all kinds of great fats. Look at that nutritional information! 0 net carbs, 2 g fiber! When we need to push more fiber, we mix it in to butter and serve it on a flacker. Oh! Flackers are awesome too! Crackers made out of flax seeds, pressed and baked together. They are tasty. I know the nutrition info of 1 flacker without looking too:
0.35 net carbs
1.65 protein
2.65 fat
2.33 fiber

As a rule of thumb, I now look for fruits and veggies that have net carbs equal to fiber. So at least 1/2 of the total carbs come from fiber. Avocados are the gold standard. Red pepper has been Nora’s go-to veggie for months now. We have just discovered the amazing raspberry. Unfortunately, I have the impression that many frozen raspberries are pre-sweetened, so check your brands. We are lucky to live in the heart of berry growing country (along with growing almost everything else), and we can get frozen Stahlbush Island Farm unsweetened raspberries all year. A few raspberries have been Nora’s reward for drinking her baking soda water (more on the acid issue later). I’m also planning on making raspberry scones tomorrow. I suspect that there is not more raspberry-love in the low-carb community because of a lack of unsweetened frozen berries. I will sing their praises here.

For other fruits and veggies, we note the fiber but it’s not so great. Apples are not so great, but Nora won’t give up her 10 g of apples (3 tiny slivers = 1.25 net carbs, 0.25 fiber). She was pining after our sweet potato one evening (funny how that happens with this diet), so I measured and gave her a chunk. I don’t remember the numbers, but it was a big chunk of her carbs in a very small (but tasty) package. We don’t eat sweet potatoes in front of her anymore. We had our first spring asparagus tonight, and I was happy that it met my rule of thumb, although Nora was not enthusiastic.

My message to keto familes–make fiber happen!

We press on

Nora is still having a few myoclonic seizures a day, 10 days after we lost seizure control. It is frustrating because we have been checking and re-checking and following the diet to the letter. We have not been able to regain the hard ketosis that worked so well before. On top of it, she seems quite constipated, which is a known seizure trigger.

I spoke with her dietician today. We talked through the situation and decided on a plan of action. And I was reassured that we should plan to suffer through another week. If it breaks sooner, we shall rejoice.

On the issue of regaining ketosis, she suggested that we add coconut oil into Nora’s diet, a medium-chain triglyceride. This kind of fat is much easier for the body to convert into ketones and can help strengthen the keto response more quickly than long-chain fats. As a happy side effect, it is also a mild laxative. We will be adding 5 g of coconut oil, 3 times per day. I had made some peanut butter coconut oil cookies a month ago and froze some, so I took them out today and Nora was a happy camper and she got at least 4.5 g of coconut oil to boot. If they work out this week, I will post the recipe.

Yesterday Ted went on a fiber crusade for the constipation, but fiber only works if she drinks enough fluid to move it through. The dietician said that the fiber rule-of-thumb for kids is her age plus 5, so Nora should get 8-9 grams of fiber. She has already been pretty close to that number on a daily basis because she gets lots of flax, carrots and red peppers in her diet, so we will keep on top of that number too.

We’ve also been reading about a protein called carnitine that is required to get long-chain fats into the mitochondria to be converted to energy (but medium-chain fats do not need this protein to move in, which makes them easier to convert, hence the coconut oil). In ketosis, this protein can be depleted because so much fat is being synthesized. The medical community is not clear on whether ketogenic diet and/or Depokote users need carnitine supplements: some prescribe it as a matter of course, others will not prescribe it unless carnitine levels are measurably low (which is the view taken by Nora’s doctor). For now, we will leave that on the table and consider trying a supplement if the coconut oil and time do not resolve the issue soon.

We will go up to Portland to the keto-clinic to meet with Nora’s doctor and dietician at the end of the month. I’m sure that they will check all of her blood levels also. As a side benefit, it seems that a trip to the doctor always magically resolves all issues. Two weeks is just the right amount of time to fix it all up.

As to why this happened, we will remain in the dark. The dietician said that seemingly small changes can make a big difference–like getting too many calories and having new brownies in the same day. Or it could be something internal to Nora–a growth spurt or development phase. Whatever the cause, it is common to take several weeks to get control back, so we will continue on the path.

First restaurant visit a victory

In the almost 3 months of Nora’s diet, I don’t think that we have been to a restaurant as a family, especially one that had been a family favorite like Sunnyside Up. The kids are accustomed to getting blueberry pancakes there, which will not fly for Nora.

Today we took the plunge and it went great. I brought food for Nora, including one of her mini-pumpkin muffins with double cream cheese. Anders ordered his favorite blueberry pancakes with a side of bacon. Nora had some of his bacon and they made her some steamed heavy cream, to which I added some cocoa and calcium that I brought with. No requests nor complaints!

We had just visited the library, so both kids were armed with some new books. Nora was absorbed in a comic book version of Totoro. For 15 blessed minutes, Ted read the directions to his new board game, I knitted and drank coffee, and the kids read their books in peace. It’s nice to get a tiny glimpse of a reduced-drama future.