Throw Back Thursday, 2.5:1

Tonight I was emailing a parent who had contacted us for help with getting started with the Modified Atkins Diet (MAD). I shared the links to the information that Doernbecher gave us when we started (http://www.atkinsforseizures.com/). They basically told us to go to it, and away we went. MAD is a very DIY diet treatment, at least when we started.

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The parent’s specific question was how we documented Nora’s diet when we got started, so I took a picture of one day from the first food log that we kept, dated 12/15/11.

Excuse the handwriting and the food stains. We stood at the kitchen counter and wrote down everything Nora ate, along with the grams of carbs, protein and fat (each column of numbers). Then added up down the column to see total carbs, protein and fat and to calculate the ratio (fat/(carbs+protein)).

We got those numbers from a nutrition database and nutrition fact panels, and had a little “cheat sheet” for commonly used foods that we kept on the fridge. After a few weeks, I knew a lot of them off the top of my head.

In those days of MAD we were estimating and using common measurements, like 1/2 T of cream or 1/4 avocado, rather than weighing everything in grams. Everything was much less precise. Although we could see a difference in her seizures at the time, we didn’t yet have complete control.

Little notes found their way onto the page too: three small myoclonics and one medium myoclonic in the morning, along with feeling tired and hungry. Ketone readings at different points during the day.

On the back side of this page, I noticed that the final ratio for the day was 2.5:1. Just where we are now. And ready to step down to 2.25:1 tomorrow, still seizure free. What a difference 2.5 years made.

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Nora’s MAD About Granola!

Last week we took Nora’s ratio down to 2.5:1 and she is still doing great! We are getting ready to go back to North Dakota and Minnesota to visit friends and family for the first time since starting the diet, so we stepped her down a little earlier than scheduled so that we could get a good 10 days of 2.5:1 under our belt before traveling.

Traveling, especially air travel, feels like a big hurdle. We’ve been analyzing our list of regular foods to figure out what we need to pack, what we can shop for on arrival, and how to keep it simple yet appealing for Nora. Interestingly, we have noticed that bringing up her carbs has made us rely on heavy cream even more even though she is getting slightly less total fat. There are very few whole foods that have both carbs and significant fat (pretty much just kalamata olives). So for every extra serving of carbs, she still needs 2.5 g of fat on the side. We didn’t realize it at the time, but changing the ratio was easier when we were adding protein because protein foods (think cheese) usually have fat in them. Even small adjustments have changed the meal planning landscape.

Now, on to granola:

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In these years of keto cooking I’ve come across a few paleo-granola recipes and always thought I should make some for Nora. However, I always hesitated because I couldn’t imagine putting in any honey or dried fruits when she was more carb-restricted, so any recipe that worked for her would have amounted to a pile of crunchy nuts. Maybe not worth the effort when she eats plenty of raw nuts already.

IMG_4894Now that she gets 25 grams of carbs per day (remember when it was 10 g of carbs per day…for almost 2 years?), I threw one of the paleo-granola recipes into my recipe analyzer website and saw my opportunity. Nora is now eating dried currants and honey! It’s just a bit, but they are in there. And this granola is so very delicious, with just a hint of sweetness, that it is much more than a pile of crunchy nuts. It is at 2.1:1 ratio, so just a bit of extra fat brings her to 2.5:1. It will be highly packable and a very “normal” breakfast on our trip. Nora also loves it! She asked for granola instead of popcorn when she watched a movie with friends recently and keeps suggesting it as a snack option. As she says, it’s like cereal, only better!

I would recommend this recipe for anyone doing MAD, low-carb, gluten-free, paleo (is this recipe paleo? I can’t keep track, decide or modify for yourself). I’ve been eating it for breakfast with my kefir too. I went back to the commercial granola this morning for comparison and preferred the homemade granola because it was more flavorful and crunchy, and not as sweet. Nora has had it for breakfast daily with full-fat plain Greek yogurt, heavy cream, and a few fresh blueberries, formulated for a 2.5:1 ratio.

If you or your child are on a high-ratio strict ketogenic diet, this batch-process might not be appropriate for you. You may still be able to make granola, but you will want to divide the ingredients down into individual servings so that you know exactly how much carb, protein and fat is served at one time. When I take 20 g of granola out of the batch, I don’t know if Nora is getting 3 or 7 currants in her breakfast. I only eyeball it to make sure I’m getting a spoonful of granola with a reasonable mix of nuts and currants. At this point I’m confident that the difference won’t matter for her, but back when we were striving for seizure control and counting the days and months of seizure-freedom I would not have taken chances with it. Alternatively, I think you could leave out the currants and be more confident that any serving taken from the batch is approximately equivalent in carbs because the honey is equally distributed.

Actually, you can completely revamp this recipe any way you like, as long as you keep the general proportions the same. This is my 2nd version of granola. The first time I used dried cranberries instead of currants and slivered almonds instead of pecans. I also included sunflower seeds in that batch, and less coconut. The first time, I basically pulled all of the nuts and dried fruits out of my cupboard and used what I had on hand. In this version, I bought the ingredients that I needed to make it lower carb and higher fat.

I know that most people won’t have brown rice protein powder in the cupboard, and it is not essential to the recipe. It’s been hanging out in our cupboard since Nora’s MAD days, when I was trying to cram more protein into everything I made for her. Now I want to use it up! Go ahead and experiment with what you like, but remember that if you are keeping close track of nutritional information you will have to analyze your recipe accordingly. The nutritional facts given here are specific to these ingredients and to be used as a reference only. Nutritional facts for the whole batch are given, and please see the note on nutritional information at the end of the post for more details.

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Nutritional information in one whole batch of MAD About Granola. See below for individual serving nutritional information. Analysis by http://caloriecount.about.com

MAD About Granola
200 g (1-2/3 cup) walnuts
200 g (1-2/3 cup) pecans
100 g (3/4 cup) macadamia nuts
50 g (2/3 cup) zante currants
50 g (1/2 cup) Bob’s Red Mill golden flaxseed
30 g (1/3 cup) unsweetened shredded coconut
10 g (1 Tbsp) brown rice protein powder
30 g (1 large) egg white, lightly beaten
30 g (2 Tbsp) water
40 g (3 Tbsp) coconut oil
40 g (2 Tbsp) honey
5 g (1 tsp) vanilla extract
1 g (1/2 tsp) ground cinnamon
1 g (1/4 tsp) salt

Preheat the oven to 200 degrees F and line a baking sheet or roasting pan with parchment paper or a silicone baking mat.

f1829440Measure the whole nuts and currants and pulse in a blender or food processor to chop the nuts, but don’t grind them into a fine meal. Pour into a large mixing bowl. You will get some nut dust, which is ok. If there are any nuts that are nearly whole, pull them out and chop down to smaller pieces. Everything should be coarsely chopped. Next, measure the flaxseed, coconut and protein powder (if using) and add to the chopped nuts. Combine well.

In another mixing bowl, whisk together the egg white with the water until bubbly and slightly foamy.

In a microwave-safe bowl, melt the coconut oil. Measure and whisk in the honey, vanilla extract, cinnamon and salt. The cinnamon makes it look dark, as in the photo. Add this to the egg/water mixture and whisk well. Use a rubber spatula to be scrape all of the mixture out of the bowl.

Combine the wet and dry ingredients, stirring everything well to make sure it is all coated. The mixture should be evenly moist but not pooling liquid on the bottom of the bowl. The liquid will pick up all of the small loose bits and bind them together, which is just what we are looking for.

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Spread the granola mixture evenly on the parchment or silicone mat-lined baking sheet or roasting pan and bake for at least 60 minutes, stirring after 20 minutes, and again after 40 minutes. After the last stir I pressed the mixture firmly into the pan so that chunks could bake together. Turn off the heat and let the granola sit inside the oven until cool. I waited several hours. I made it in the morning and did the hour of low baking, then took it out of the oven in the evening after dinner. The granola will continue to dry and form clusters in that time.

Use a spatula to gently break the granola into clusters. Some loose bits will also break off. It’s all good. Transfer everything to a 2-quart sealable glass jar, or any airtight container to keep it fresh.

Nutritional information note: Notice from the nutritional information that the raw measured ingredients add up to 787 grams before cooking. After cooking, the whole batch weighed 710 grams. Typically baked goods lose about 10% of their weight by volume when the moisture cooks out of the food, which is true here as well. That means that you get more carbs, protein and fat per gram of cooked food because only the water weight disappears. When you calculate the nutrition per cooked serving in a batch like this, you have to divide by the cooked weight to get accurate nutritional data.

For every 1 g of cooked granola in this recipe, there are:
Carbs: 0.13 g
Protein: 0.15 g
Fat: 0.58 g
Fiber: 0.09 g

Add that up, and you get 0.97 g of macronutrients in 1 g of granola. We can infer that there is 0.03 g of water left too. Math and science at work!

In a 20 g serving typical for Nora, a scant 1/4 cup, this recipe has:
Carbs: 2.64 g
Protein: 2.91 g
Fat: 11.66 g
Fiber: 1.86 g
127 calories
2.1:1 ratio

Enjoy! Inspiration for this recipe from: http://www.theroastedroot.net/paleo-granola/ and http://againstallgrain.com/2012/01/29/grain-free-scd-paleo-vanilla-granola/. But just google paleo granola and you will find many more! Try it and you will never go back to commercial granola or cereal!

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Meet the cows who make the cream: Organic Valley farm visit

IMG_4848Nora and I took the perfect keto kid field trip! We visited an Organic Valley dairy farm just 30 minutes from our house, makers of Nora’s brain-healing heavy cream. We are very good Organic Valley customers and Nora was happy to meet the cows that make “her” cream. She keeps asking to have her own dairy so that she can sell milk door-to-door. I keep telling her that the city will not allow us to have a cow in the backyard. She should focus her attention to her chickens. Visiting cows is the best that I can do.

Double J Jersey dairy farm is run by the Bansen family, Jon and Juli and their four children. Their oldest, Ross, is now a part-owner of the farm after getting a business degree in Iowa and traveling the world for a year visiting dairy farms. Their other children have their own responsibilities on the farm, the youngest is a senior in high school. They moved to the farm with a 2 year old and a newborn, then in 2000 they converted to organic pastured production and joined Organic Valley, a cooperative of 1,800 dairy farmers across the US committed to the economic success of mid-sized family-owned dairy farms along with the environmental benefits of organic production.

Keto families also love Organic Valley because our dietitians tell us that it is the only cream that is reliably free of carbs. The whole milk comes from the cow, and the cream is then separated at the creamery but some of the lactose in the milk could remain with the cream. Many other brands of cream report 0.5 g of carb per serving, some report zero, but in reality might be up to 0.5 g to 1 g of carb after processing. Keto dietitians recommend Organic Valley because in their experience it is all fat, just the good stuff. When we calculate Organic Valley cream for Nora’s meals, we count it as 40% fat, 60% water. Nothing else.

Nora displays her butter. Photo courtesy of Ann Shriver.

Nora displays her butter. Photo courtesy of Ann Shriver.

Our first farm activity was taking those familiar cartons of heavy cream and making our own butter! We poured some cream into a glass jar and shook for about 10 minutes. It got thicker and thicker until it didn’t even seem like anything was sloshing around in there, then all of a sudden it was a clunking chunk of yellow butter! The buttermilk that had separated was thin and I let Nora drink it right from the jar, along with tasting that yellow buttery deliciousness. It was the softest, most buttery butter I had ever tasted. Where else can you take a tour and get perfect high-quality fat for samples? Try it yourself. It’s like magic!

All of the Bansens who gave us the tour were wearing Organic Valley t-shirts that said “who is your farmer?” In this world of industrial food from nowhere, we are privileged to see the origins of our food, and the cows are fortunate to live such a comfortable life. The milk truck comes to their farm every other day and takes it to creameries in Portland, where Organic Valley rents processing facilities from other creameries (Darigold and Alpenrose, in Portland) to process and package the raw milk into the dairy products that we buy at the store. The organic milk is run first thing in the morning when the machines are clean. If you look at the printed code on your milk or cream carton you can see where your milk was processed before being delivered to the grocery store. Nora’s Organic Valley cream has the code 41-33. Put that code into this website: Where is my milk from? It was processed at Alpenrose Dairy creamery in Portland, OR, but it came from an Organic Valley dairy. There is a good chance it came from Jon Bansen’s Jersey cows, but alternatively his cousin Dan and niece Jamie also have their own Organic Valley dairy in Oregon;  brother, Bob, runs the dairy the boys grew up on in Yamhill County, Oregon; and Jon’s older brother, Pete, operates the original family dairy back in Ferndale, California. It is highly likely that Nora’s Portland-processed cream came from a Bansen cow!

Happy cow, waiting to be milked in a few short hours.

Happy cow, waiting to be milked in a few short hours.

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In the pasture where the cows would be grazing later in the day.

We walked out to the pasture with Jon, where he told us about his rotational grazing method and his real job: to take care of the bacteria that make a healthy soil to grow nutritional pasture, which in turn takes care of the bacteria in the cow’s gut to break it down and turn it into nutritional milk. He moves the herd through paddocks with movable fencing every day when the plants are just the right height for grazing: healthy long green tender plants up to our shins that let the cows eat their 300 pounds of grass per day (really?!?), but have not become so tall and fibrous that they are hard to digest. He could count 15 different species in the pasture, some of which are “weeds” that the cows eat and many of which he planted with a no-till process that keeps the soil intact and healthy. The cows munch down the pasture so that the plants can spring up again, while working their “nutrients” into the soil to fertilize (I stepped in some of those “nutrients” in the barn!). Cows have 4 stomaches and are “fermentation vats on legs,” as Jon told us. The plants turn sunlight into food to grow, the cows turn those plants that we can’t digest into milk (sugars, protein and fat), and if we take care of the pasture and cows we get the nutritious milk and cream. It’s a pretty sweet deal and we should thank our farmers.

Kids take a walk through the fly vacuum!

Kids take a walk through the fly vacuum!

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Ross demonstrates the automatic cow brush.

These cows live a comfortable life. They are out on pasture from the first spring day when the Oregon winter rains break, usually in March. Jon says that the first day out to pasture is the best day of the year, even better than Christmas. When they have to be inside, during the winter or very bad weather, they are sheltered in open air barns with bedding. During the winter they eat silage that was cut from their own fields and stored on the farm. The farm has bird houses everywhere, especially up in the rafters of the barns. They are home to swallows and swifts that feast on the flies and keep the cows comfortable. There is also a fly vacuum that the cows walk through when the go to the milking parlor twice a day. It is a low, gentle suction that takes the flies off of their bellies.

The barn also has a full-body cow brush, which turns on when a cow rubs against it. They can use it whenever they want it. The ladies can come over for a full-body brush/massage when they are in the barn. Ross said that in the winter they even butt heads about getting a turn, so they put in 2 of them. In the spring when they are shedding there is a lot of hair left on the floor.

When the cows are in the barn for the winter, their waste moves into a concrete lagoon beside the barns. There was no mistaking that this was a dairy farm by the smell, but it was a clean rich odor, not a sickening manure smell. The lagoon is managed properly and the waste is spread over the fields in a thin layer 3 times per year to keep the nutrients in the cycle, worked back into the earth where the plants can take up the nitrogen and use it again in the growing cycle.

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The milking parlor.

We also visited the milking parlor, a small clean room where they go twice per day. There is a heater on the ceiling for cold winter days, and large fans in the walls used in the warm summer. The cows get about 2 pounds of organic grain when they come in for milking, a mix of barley, oats, and corn. It’s a little “incentive” to come off the pasture. They don’t need the grain but it’s a treat, like “junk food” for cows. Ross told us that they like it and it gives them a little extra quick energy for making all of that milk. Nora really wanted to see how the milk and cream is put into the containers, but we will have to go to the creamery in Portland for that tour.

Nora and a 2 day old calf.

Nora and a 2-day old calf.

We can’t forget that cows have calves, which is the start of the whole milk-making process. There was a group of cows that were waiting to calve, the “dry cows” because they will not make milk until after they give birth and are not given hormones to increase or prolong milk production. When the calves are born, Juli Bansen becomes their caretaker. She sees that they get enough milk and food to grow. The males are sold to a nearby farm who raises them for beef, sold specially as Jersey beef to Portland restaurants. Jerseys are good at making milk, but their small frames are not the breed of choice for large cattle feeding operations. The Bansen’s special breed and organic production make them perfect for specialty beef. The females may be added to the herd or sold to other dairy farms.

Because they are an organic dairy, they may not use any antibiotics or hormones. If a cow gets sick and needs medicine they have to take her out of the herd and sell her to a conventional dairy. The Bansens said that after they switched to organic and gained experience, they almost never have a sick cow. All of the time spent on pasture and nearly 100% pasture fed means that the cows’ bodies are allowed to do what they are meant to do: ferment and break down green plants. They are out in the open and not exposed to excess waste or stress that will tax their immune systems. A happy cow is a healthy cow.

It was a pleasure to see the Bansen farm at work and listen to their experiences. It was clear that they take great pride in their dairy and the health of their animals. Their house was right next to the barns, surrounded by lush gardens lined with bird houses and a chicken run. A blue heron soared across the fields into a stand of trees while we were walking to the pasture. The calves were kept just steps from the front yard. They clearly enjoy their lifestyle and it makes a good living, so much that their oldest son is in the process of taking over the dairy so that his parents can retire. It is a special thing to see people love what they do, surrounded by healthy land and animals, both domestic and wild. It feels good to know that we are supporting their work by buying their milk and cream, which is in turn keeping Nora’s brain healthy and growing. We were there celebrating their success and we thank the Bansens and other Organic Valley farmers for giving us a healthy option for Nora that we can feel good about in every way.

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Continuing to wean and a berry tart for spring

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Nora’s birthday pool party, with keto cheesecake and strawberries, post-sunscreen and goggles!

We moved Nora’s ratio down to 2.75:1 about 10 days ago and she continues to thrive. So much has been going on that we have not had time to write a thing–dance recital, kindergarten graduation, Father’s Day, summer vacation, and Nora’s birthday! She turned 6 last Sunday and enjoyed a pool party with her friends. She requested Keto-Perfect Cheesecake as her birthday treat, with lots of strawberries on top! Half of the cake was lunch, the other half was afternoon snack and part of dinner. What a great day!

This feels like a significant step down in ratio because Nora’s myoclonic seizures didn’t stop until we were using a 3:1 ratio in a consistent way throughout her day. We are now below what felt like our “safe” point. Ted has checked ketone levels with the urine dip sticks and found that she isn’t in the highest ketosis level all of the time anymore, although still quite strong. From here on out we increase her carbs and decrease her fat because she is now getting the daily protein requirements for a kid her age. When we stepped it down to 2.75:1, she went from 17 g of carbs per day to 21 g of carbs per day. That’s a pretty big jump, 4 extra grams of carbs is a treat (see 1 gram of carb of various foods here). Hooray for fresh berry season! We are getting at least 1/2 pint of raspberries from our own bushes every day and getting to the farmers’ market weekly to make the most of her new carb allotment. I’m starting to think about trying the higher-carb fruits and veggies that have been off-limits.

Look at all of those berries!

Look at all of those berries!

With all of the milestones, particularly moving down the ratio and her birthday, both Ted and I have been feeling more anxious. We don’t take for granted that Nora is so big, healthy and smart today, which sometimes makes the wean seem all the more perilous. The better things are with Nora, the more we have to lose if epilepsy lashes out at her again. Of course, we still have every reason to believe that she will wean off the diet and do fine, but some of these moments have us holding our breath, hoping that it is all behind us. We went camping last weekend. Nora could not remember going camping before, it has been so long since we went as a whole family. She loved every minute of it and we had watermelon with our dinner, including some for Nora. We are going back to visit family and friends in the Midwest this summer, which we have not done since starting the diet. We hope that this is the new normal.

I’ve done some extra baking to let her enjoy the new ratio, mostly using almond meal more than I have before. I tried this berry tart crust recipe, slightly modified from the Almond-Pecan Piecrust recipe in The Joy of Gluten Free, Sugar Free Baking and it turned out great. Sturdy enough to remove the tart mold and look like something from the French bakery while being simple and delicious. It’s a keeper.

Nutritional information for one Tart/Pie Crust, with berries. Nutritional analysis by http://caloriecount.about.com/

Nutritional information for one Tart/Pie Crust, with berries. Nutritional analysis by http://caloriecount.about.com/

Tart or Pie Crust
(1 serving, 2.5:1 ratio)
13 g almond meal/flour
3 g ground pecans, or hazelnut meal/flour
3 g coconut flour, Bob’s Red Mill
6 g butter, melted
0.3 g baking powder
1 g vanilla extract
dash of salt
4 to 5 g water as needed (see below)

Preheat oven to 325°F. Weigh and mix together nut flours, baking powder and salt. You can use a sprinkle of no-carb sweetener such as stevia if desired.

Melt butter and mix in vanilla extract. Stir into dry ingredients and add water just until the mixture is stiff, like the consistency of playdough.

Put the dough into a single-serving tart or pie pan, spread it with your fingertips until it is evenly distributed. You could also shape it into a flat circle on parchment paper or a silicone baking sheet. Prick the bottom and sides a few times with a fork to prevent air pockets. Cover the edges with aluminum foil (or not) and bake for 10 minutes if using a cream-like or custard filling. I haven’t tried it, but I bet the blueberry panna cotta recipe would be wonderful if added to a baked tart crust. I’ve got a mind to try the vanilla cream pie filling recipe from the cookbook as well, with appropriate modifications.

IMG_4779To make it a berry tart, calculate the amount of berries and coconut oil or butter you want to use as a topping. For example, for a 3:1 ratio, you could add 10 g blueberries, 20 g raspberries, and dot with 5 g coconut oil (pictured). Bake for about 20 minutes or until berries are bubbly and crust is browned. Then serve 14 g cream on the side, as whipped cream, with tea, or as “keto milk” thinned with water and with a drop of vanilla flavoring.

I’ve used this basic recipe for berry tart and cheesecake for family and friends after trying it for Nora. Using a full-sized recipe and pie pan, I made the chocolate crust version adding cocoa powder and sugar (of course, for Nora I would use stevia instead of sugar–the chocolate requires some sweetener or it would be too bitter). The crust got rave reviews from a group of grad students! I personally like the flavor better if I skip the coconut flour, but it holds together better if it is included. This recipe is versatile enough to be modified for your needs. If you want to make a firm-sided tart, make sure to use the coconut flour version and a little more water. If you don’t mind it a little more crumbly, use all pecan or hazelnut and slightly less water. It’s all good.

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Antibiotic Time

Quick update and tip for childhood illness!

Nora is still doing fine on 3:1. We will step down to 2.75:1 next weekend, right after the last day of school and kindergarten graduation.

Last week Anders came down with strep throat, which was diagnosed very quickly. He got the pink liquid antibiotic of amoxicillin and was feeling better 24 hours later. We were on the look-out for another family member to fall ill, especially Nora.

I started feeling cruddy on Saturday, so I went to urgent care and took Nora with me even though she said she felt fine. They did throat swabs on both of us. The rapid tests came back negative, but Nora’s 24 hour culture came back positive (but not mine! I’m was feeling better the next day.)

Nora has not needed an antibiotic in over 2 years! We referred back to our illness preparedness plan post and found little guidance on how to deal with antibiotics. Ted went to the pharmacy to explain the situation, and thankfully the pharmacist was happy to work with us.

He explained that they mix powdered amoxicillin with the “pink stuff” right at the pharmacy but he did not have any information about the ingredients in the pink stuff. Instead of mixing, we took home plain capsules of amoxicillin. Dosage is 1 capsule in the morning, one at night. Nora doesn’t swallow large pills, so we open the capsule and mix the powder with a bit of yogurt. Nora doesn’t mind the taste, and this is a girl who has taken a lot of medicine mixed in stuff. She knows when it tastes bad and is not afraid to say so. Now we have 9 more days of morning and night doses and we are in the clear. Glad we caught this now so that she is healthy for kindergarten graduation!

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Stepping down to 3:1

Nora has been cruising along as 3.25:1 for the last 3.5 weeks. Her wean schedule calls for going 3 to 4 weeks at each step down. Originally we thought that we would keep 3.25:1 for 4.5 weeks, because we started mid-week and will make changes on the weekends. She is doing so well that we decided to go for the next step down last Saturday. All is well!

We’ve been looking forward to 3:1 from the meal planning angle because many of the whole foods that make up the backbone of Nora’s diet are well above 3:1, like avocados, cream cheese and macadamia nuts. There are a few others that are at or near 3:1 that now will support the ratio instead of dragging it down, like walnuts. I suppose “so much easier” is really a matter of perspective. After doing it for a few days we can see the difference between 3.5:1 and 3:1.

This month’s ratio change brings her up to 26 g of protein, her full requirement for a kid of her age and size. Her carbs will only come up 0.5 g. That means that this month we adjust to getting more cheese and meat in her diet, and the step downs after this will be marching up the carbs while decreasing the fat.

I like to have at-ratio popsicles made for easy afternoon snacks. I didn’t re-do any recipes for first step down, but I redid them last weekend to get to 3:1. It made me realize that we don’t have a lot of at-ratio recipes for her. Instead we build meals around various foods that she requests, adding the necessary fat to the meal in other ways. I recalculated her berry frozen yogurt pops and chocolate chip frozen yogurt pops and made a batch of each at 3:1 this weekend (note that the linked recipes are at 3.5:1, but decreasing the cream or increasing the berries, yogurt or protein powder appropriate changes the ratio). Very little has changed in those popsicles, Nora won’t even notice the difference, but now we have a stash of snacks to get us through a few weeks.

This is a short and sweet update, so here’s a fast keto-fact observation: Nora very rarely ever passes gas. If she does toot or burp, it’s a huge hilarious surprise! Maybe other keto-families have noticed this phenomenon too?

Posted in Nora's History | 1 Comment

Keto kids make the news

Last year when Nora was approaching her 1-year seizure free anniversary, I called our local newspaper because I thought they might be interested in her story. They love a good human interest story and I wanted to spread the word about the keto diet as a treatment option for childhood epilepsy. They wrote a great article that surprised us by being put on the front page of the Sunday paper! (Here’s the post on last year’s story).

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Nora and Dr. Wray. Photo credit: Amanda Cowen, Corvallis Gazette-Times/Mid-Valley Sunday

This year, approaching Nora’s 2-year seizure-free anniversary, I contacted them again because sometimes they do small “updates” on stories that they have been following. Instead of a small update, they asked if they could send a reporter and photographer to Nora’s doctor’s appointment and this time they told us that it would appear on Sunday’s front page.

But the real news is what else happened in that year–not to Nora, but to another child from a nearby town. Because we told Nora’s story and the newspaper decided it was big news, the Swick family got the resources that they needed, the right diagnosis and started the diet one week later. The story doesn’t say it explicitly, but Jaron has Doose syndrome and the diet is the best treatment. How they made the journey to the diet is in the article, and now Jaron is big news too–and seizure free!

Here’s the article: http://www.gazettetimes.com/news/local/seizure-stopper-word-of-diet-program-spreads-now-helping-philomath/article_ebd16b88-cbd4-11e3-b0bf-0019bb2963f4.html

I’m so relieved for Jaron and his family. We’ve been blogging to reach out to others who need support because we’ve received so much comfort and ideas from other families who have taken this path. May we all pass it forward so that all kids get the right treatment when they need it.

We want to thank Doernbecher Children’s Hospital and Dr. Wray for opening their offices to tell Nora’s story. Dr. Wray joined the practice just when Nora needed him, during her own “crisis mode” moment. We would not be here without his expertise and smile. Going to the doctor is a treat when we get a smile and giggle every time. They are running a top-notch program. We look forward to working with the ketogenic diet program to set up a formal support group this summer, so stay tuned for developments.

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And now we wean

Dr. Nora taking my blood pressure. I strongly encourage this game.

Dr. Nora taking my blood pressure. I strongly encourage this game.

It is a big week in Nora’s world, although I’m sure it seems bigger to us than to her.

Yesterday we went to Portland to see Dr. Wray for her ketoclinic checkup. Tomorrow will be her 2-year seizure-free anniversary. It is a big milestone. The rule of thumb in pediatric neurology is to get 2 years seizure free, any way that works, drugs or diet. If you can do that, there is a 60% chance that the child can come off treatment and never have another seizure again.

That doesn’t seem like great odds to me, but that’s the one-time all-comers study. Every epilepsy, every treatment. There is some indication that idiopathic childhood epilepsy (unknown origin) like Nora’s has a better chance because it may be due to some sensitive window in brain development. If her brain can grow and develop past the window without seizures, it is likely that she is past the problem. On the other hand, we don’t know why it is happening, so there may be some underlying glitch that is not resolved. So maybe we are back at a 60% chance.

Ted and I are the analytical types, so we like some assurances like good probabilities. But we won’t know if her epilepsy is resolved until we try going off the diet, and it is not fair to keep Nora on a treatment that she might not need. So this is the anniversary we have been waiting for. It’s time to try to wean her off the diet!

The Slow Wean Plan

There is no consensus about the exact wean procedure, except for what you should NOT do: an IV of glucose, or a trip to the cotton candy factory, for example. We have had such a good experience and don’t have a rebellion on our hands, so we are choosing the slower-wean route to start. If we stick to this schedule, it will take us about 1 year to get down to a 1:1 ratio and go to a Modified Atkins Diet. We will see what happens after that.

We are going slow to give Nora the best possible chance of successfully coming off the diet, but the down-side is that we will be living with our friend the gram scale for a whole extra year and Nora may not perceive the differences in her diet. But when we look at the schedule for the next 4 months we see the difference.

We will go down on her ratio by 0.25 every 4 weeks. That means that now she gets 3.5 g fat for every 1 g carb + protein. Tomorrow we are changing to 3.25 g fat for every gram carb + protein (3.25:1). In 4 more weeks we will go to 3:1, etc. They will first increase her protein, then after she gets up to her recommended protein intake for her weight they increase the carbs. For example, all at 1350 calories:

4/23-5/24: 3.25:1 ratio, 132 g fat, 23-24 g protein, 17 g carbs
5/25-6/21: 3:1 ratio, 130 g fat, 26 g protein, 17-18 g carbs
6/22-7/19: 2.75:1 ratio, 129 g fat, 26 g protein, 21 g carbs
7/20-8/16: 2.5:1 ratio, 127 g fat, 26 g protein, 25 g carbs

That 25 grams of carbs seems like so much! 2 months after that she would be up to 35 g carbs! See the picture of 1 gram of carb for various fruits, veggies and nuts from the last time we made a diet change. But because it will happen so slowly, I wonder if Nora will really notice the difference and remember what it used to be like. She doesn’t complain about her food, but she wants more freedom of choice, like taking out a snack when she wants to. I will try to give her more of that freedom by keeping more at-ratio snacks around for her to choose from, which I hope is easier with lower ratios.

If all goes well, we can choose to speed up this process. We could go 3 weeks in between steps, or we could jump down by 0.5 on the ratio each time. We will watch and wait.

The “What If” Conversation

We had to ask all of our “what if” questions when we saw Dr. Wray yesterday. We watch and wait. He said that time is the epileptologist’s friend; we will see how she responds to the change over time. The more time that passes, the more information we have. We have to look for patterns. I’m not sure that time is the parents’ friend in this case. We would love some certainty but will have to cope without it.

Nora could have more seizures. If they are a tonic-clonic convulsive seizure, we manage in the moment then wait and see. It might be isolated, so our best strategy will be to wait. She may have more myoclonics. Dr. Wray said that people with a mild myoclonic epilepsy sometimes have a few myoclonics in the morning, but it is not so disruptive that they want an invasive treatment like drugs or diet. Again, we would have to wait and see. We don’t know the cause of Nora’s epilepsy, so we don’t know how this will play out. We only need time to find a pattern and make some decisions. If she develops a pattern of seizures that interferes with her life, we would have the option of diet or drugs again.

The best news is that she is past the window for the devastating degenerative conditions that we all worried about in the beginning. She has developed perfectly, cognitively and neurologically (otherwise) normal, growth on-track, all systems go. That is the comfort and reason to celebrate.

This quote sums up how I feel about it (thanks to keto-mom/friend Fawn for passing it along):

“Nothing is more desirable than to be released from an affliction, but nothing is more frightening than to be divested of a crutch.”

~James Baldwin

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Two Takes on the Pizza Crust

Kids love pizza, and keto kids deserve pizza too. Pizza is also a common quick meal, frozen or delivered, for many families on busy days. But with a keto kid you can’t feed the whole family, so it’s nice to have a fairly simple pizza crust that you can pull together or pull out of the freezer to include your keto kid while you wait for the delivery guy to show up. We’ve spent two years refining our pizza crust techniques, and I think we have 2 winners to share.

The first is a re-purposed version of cheddar crackers, from the Keto Cookbook. It is simply a mix of about equal parts ground macadamia nuts and shredded cheddar cheese. I left out the egg white and it worked fine for a quick crust, but it isn’t very sturdy. It is made of just 2 common ingredients and I don’t have a recipe because you can make it as large or small and vary the proportions as needed to fit in a meal (see examples below).

Mound of cheddar and macadamia nuts on a small pizza plate (left), and after pressed and baked (right).

Mound of cheddar and macadamia nuts on a small pizza plate (left), and after pressed and baked (right).

Simple instructions: Set the oven to 375°F. Measure the shredded cheddar and ground macadamia nuts together, mix well, and press into a small circle on parchment paper placed on a baking sheet. Bake until melted together and barely browned and bubbly. Take out and add toppings, bake again until cheese is melted.

Quick snow-day lunch. Nora pizza (left), frozen pizza (right).

Quick snow-day lunch. Nora pizza (left), frozen pizza for Anders (right).

You can build a meal around it. For an example of proportions, we made a little pizza of 10 g shredded cheddar, 16 g ground macadamia nuts (baked to crust), 10 g tomato sauce, and 14 g whole milk mozzarella (with enough fat on the side to make the ratio correct).

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Tostada-crust with hamburger, cheddar, and olives.

We also used this tostada-style with hamburger, cheddar and olives. I used 12 g ground macadamia nuts, 10 g shredded cheddar, mixed and baked the crust as described. Then added 14 g hamburger, 10 g sliced kalamata olives, and 6 more grams of cheddar. With avocado and extra fat (fish oil and cream) on the side. Sour cream would be a great addition, although not loved by our keto kid.

I thought it was easy to make 2 crusts at a time, knowing that I would use one again the next day also. Using the second one the next day helped me keep track of the proportions of cheddar and macadamia nuts.

 

The second pizza crust winner is from our Toasting Bread recipe. It has been a smash hit recipe for sandwiches and toast, and now as a pizza crust. I experimented with a few other pizza and focaccia recipes also from The Joy of Gluten-Free, Sugar-Free Baking and decided that the toasting bread can’t be beat. It is not a spur-of-the-moment-throw-together crust, but you can make a big batch and put them in the freezer to pull out and use anytime. Weigh, calculate your toppings, and put it in the oven until the cheese is bubbly and the crust is warm. Easy as pizza pie.

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Toasting bread and pizza crusts from the same batter.

We are on spring break right and it’s been pouring rain all day, so I spent several hours baking. It is nice to get ahead by having a few items in the freezer for quick meals. Nora asked for toasting bread again and I have found that I like to make it in a small loaf pan instead of the full-sized pan. This time I made a full recipe, put 1/2 of the batter into the small loaf pan, and made the rest into 12 pizza crusts. Because I’ve figured out the nutritional information per baked gram of bread (see original post) I didn’t pre-weigh the crusts. I can just weigh them before using them and build the meal around it.

I like making this bread recipe because it doesn’t require whipping the egg whites until stiff and carefully folding in the other ingredients. It all just goes into the mixer and it is soft and sticky enough to work with. It puffed up surprising nicely in the oven. Each baked crust is solid enough to hold up, not at all crumbly, but with a nice bready texture and nutty flavor.

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When I experimented with the other crust recipes we had some fun by pressing the dough into gingerbread cookie cutters. Instead of rolling out the dough and cutting out pieces, I pressed the dough into the shapes and then carefully removed the cookie cutters, using a small rubber spatula to keep the edges in shape. That was fun and Nora liked topping them herself. They are very small, so bigger kids might get 2!

IMG_2967When I figure out the full pizza meal, I weigh out all of Nora’s pizza toppings onto a small plate and let her build her own pizza. She loves the chance to work with her food and make it her way. She also nibbles on the toppings and licks her fingers, a rare pleasure for a keto kid! Because it is all allotted to her meal, it doesn’t matter whether she puts it all on the pizza. I just try to remind her to put enough on her pizza to enjoy it when it comes out of the oven!

It is especially nice to have a pizza crust that can be sliced and eaten in pieces, and will stand up to being carried around. We took an outing to our favorite local pizza place and brought Nora’s pizza along with us. It was a treat to eat out together, which is pretty rare for us. A pizza crust that transports well while still being delicious (not just edible) is a special thing.

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Keto Valentine’s Day Love

Nora woke up yelling “Valentine’s Day!” She loves love. She made her own Valentines for all of her classmates after being inspired by the card she received from Grandma Sheryl. She started with making a heart, and wrote “Happy Heart Day” and just kept rolling until she made one for each member of her class! I only helped with the heart shape, otherwise it was all-Nora.

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For a little extra special keto treat to bring to school, I melted her daily B^3 and poured it into a heart-shaped silicone cup to re-harden with the apples on top. I also made a “cookie” of ground macadamia-coconut oil-blueberry to solidify in another heart mold. Easy!

Her teacher sent home a note asking the kids to bring cards to exchange, but she didn’t really specify that candy was not welcome. I’m sure Nora will see some candy today, and we’ve had a talk about it. As an alternative, I made some Lego-guy chocolates from the Charlie Foundation’s Chocolate Candy recipe (with video!). I added a drop of peppermint extract to one batch for a twist. Unfortunately the heads fall off when they pop out of the mold. Good thing they are not long for this world anyway.

Happy Valentine’s Day! Spread the keto-love!

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