Category Archives: Nora’s History

Throw Back Thursday, 2.5:1

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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.

Nora’s MAD About Granola!

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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!

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.

Stepping down to 3:1

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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?

Keto kids make the news

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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.

And now we wean

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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

Keto clinic checkup and diet changes

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On Monday we made our way to Portland for another keto clinic check up with Dr. Wray. Nora continues to thrive. She is in her 20th month of seizure freedom! Her growth rate is right on track even after 2 years of diet therapy, 60th percentile for height and 75th for weight (I think she’s ready for a growth spurt). Dr. Wray reviewed her history and genetic testing and feels that there is no reason to keep her on a carb-restricted diet in the long term. Very good news.

Her labs were all fine. For those of you keeping score at home, her cholesterol panel was good at 188, triglycerides at 54, LDL (bad) minimally elevated at 135 and HDL (good) normal to good at 42. Her blood bicarb level was at 21, which is normally low but not too low.

We still can’t get Cytra-K in crystal form as before, so we will continue with baking soda (6 g dissolved in water given over the course of the day). She has avoided stomach upset after we learned to give small amounts of baking soda solution between meals. It seems to be a problem on an empty or full stomach. We have the option of using Cytra K oral solution (great cherry flavor!), but the stats I got from the dietician suggest that it has 3 g of carbs in her daily dose. We don’t think that’s a good trade off, when she could be getting 3 g of carbs through fruits and veggies. We will stick to the baking soda for as long as Nora tolerates it.

The biggest news is that we are going to adjust her diet to prepare for weaning her in April after her 2 years seizure-free. For the last 6 months she has been getting about 11 g carbs, 25-26 g protein and about 130 g of fat per day, which is 1300-1350 calories at a 3.5:1 ratio (fat to carb+protein).

That’s a small amount of carbs even by keto diet standards for this number of calories. When we increased her calories last time, the dietician suggested going up to about 16-17 g carbs, which felt like a big jump from 10 g of carbs, so we only increased it to 11 g at that time. Now we are going to keep the calories and ratio the same, but bring her carbs up to 16-17 g per day. That gives us a new daily target of 16-17 g carb, 20-21g protein, 128-133 g fat.

We will increase it by a gram every few days, so that she is up to 16 or 17 by the holiday break. Today she is up to 13 and is fine so far! When we told her that we were going to let her have more fruits and veggies she was so excited! It’s tiny baby steps to coming off the diet, but slow changes give us peace of mind. Slow but significant for Nora. Although she won’t do it all at once, going from 11 g to 16 g of carbs will feel pretty good!

I often get the question about “what does 1 g of carbs look like?” Of course, it depends on the food. It’s hard for me to answer on the fly because now I think in grams, not number of blueberries or baby carrots. Today I calculated one gram of carb for several of Nora’s regular foods. Some of them have significant fat and protein as well (so they are bigger servings), for those I listed their ratio too:

IMG_43031 g of carbs in:
8 g blueberry
17 g macadamia nuts (5.43:1 ratio)
8 g apple
14 g carrot
11 g almonds (1.63:1 ratio)
46 g avocado (3.62:1 ratio)
15 g kalamata olives (4.5:1 ratio)
16 g strawberry (not pictured)
18 g raspberry (not pictured)

With 5 extra grams of carbs per day, Nora can have about 6 more baby carrots per day, or 40-50 small blueberries! That’s a lot!

Dr. Wray continues to be delighted by Nora, and to delight us. Anders joined us for the appointment because of a no-school snow day. Dr. Wray made a note of Anders presence in his follow-up report we received in the mail, and that is name is “pronounced with a soft A, which is the Norwegian articulation of his name.” See doc, we read these things with care. Anders thanks you.

Bringing Keto to Kindergarten, Part 3

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It’s almost half way through the school year!

When things are going along fine but you know there are potential problems lurking, it’s hard to feel really at ease. You can’t really know that things will be fine until something goes wrong and you see how everyone handles it. We had our first real keto-problem at school yesterday. It was handled perfectly. We have a new kind of peace of mind about Nora at school.

We have been sending her “milk” in a small mason jar with a drink/pour lid. I’ve always been afraid that it will pop open and spill all over the lunch box, losing all of that necessary fat to make up her ratio. It didn’t spill yesterday–the jar broke! Nora opened her lunch box to cream and broken glass. Yikes.

The school called me, but I was teaching and my phone was off. They called Ted next, who was much more clever than I would have been. When I heard their message I was ready to jump on my bike and get new cream over there. Luckily I called the school back first and found out that it was taken care of.

When Ted got the call, he asked if they had any butter at the school. They did not (really? not part of a healthy school lunch, I guess). The secretary suggested that they have olive oil in the teacher’s break room, so Ted calculated that 2 teaspoons of olive oil would do the trick. Nora wasn’t happy about it, but she took it and no one had to leave work.

On a related note, we still have not made a formal 504 plan with the school. The nurse has not contacted me about it again, and in the rush of daily life I have not pushed it. It is comforting to know that her teacher (who was part of the chain of command) and the school staff were aware of her needs and worked with us to find a solution.

Nora also had her routine blood draw yesterday for Monday’s keto clinic appointment with Dr. Wray. Ted took her in when the lab opened at 7:30, so she was a little late to school. When she came into her classroom some of her friends came over to give her hugs and brought her to the rug where they were singing and dancing their morning songs. Ted left with a warm and happy feeling about Nora’s school. That’s another wonderful kind of peace of mind.

Many thanks and muchas gracias to the wonderful people of Garfield school who take care of Nora every day!

Odds, Ends, and Giving Thanks

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Just a quick update with a few keto notes that have been on my mind. Nora is 19 months + 2 days seizure free, getting over a nasty cold/flu and looking forward to Thanksgiving break from school.

Still no Cytra-K and Nora’s keto clinic appointment for last Friday had to be rescheduled because her doctor had a family emergency. We wish him the best and are looking forward to getting a new appointment.

Thanks to Ted’s creative parenting and Nora’s 5-year-old maturity, taking baking soda as a Cytra-K substitute is going smoothly. Ted mixes up 1 tsp of baking soda in about 1/2 cup of water. We give her up to an ounce with every meal and snack. On school days she has one at breakfast, then one with afternoon snack, dinner and anything left at bedtime. No more pukies for awhile, so it must be doing the trick and spreading it out over the day seems to help ease any tummy upset.

To convince her to take it, Ted played Mojo Jojo for several days, telling her that if she takes her baking soda she will have super powers like the PowerPuff Girls to defeat him, but if she doesn’t take it then he can take over the world (he was very convincing!) She gulped it down and attacked!

This morning as we were trying to get to school on time, she said “but I haven’t taken my baking soda yet!” and sipped it down all by herself. Although it will never be a yummy treat, it’s also not torture anymore. What a relief.

I also wanted to share some keto updates and success from other families. I cry when I read their history and their bumps in the road because I know what it is like, but I’m also so hopeful and proud to see them overcome. Good attitudes and stories are contagious. Even though I may never meet most of these families in person, I hope they know that we are out here pulling for them, and I know that they (and our readers) are pulling for us too. We are always stronger together.

  • One of the first keto families that we connected with online is nearly weaned off the diet, after 5 long years of struggling with Doose syndrome and fighting for seizure control. I don’t have a blog post with the news, but I’m so thankful to keep up with Fawn on Facebook to get the news as it happens. Jade is out of ketosis! We are celebrating with you!
  • Amazing KetoCook mom Dawn posted an update at long last. I had the honor of meeting Dawn at the Charlie Foundation conference over a year ago. She has done so much for keto parents everywhere, but her most important accomplishment is seeing beautiful Charlotte through Dravet syndrome every day and continuing to do everything possible to head off a seizure. We have learned so much from you and we are cheering you on always. Your family is an ongoing inspiration.
  • And ketokid Autumn from Fort Wayne is in the news for 18 months of seizure freedom!

We have the deepest gratitude for the support we have received from everyone in our lives, near and far. Here’s to a restful and filling Thanksgiving holiday with our closest ones happy and healthy.

Bringing keto to kindergarten, part 1

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Nora started school this week! Our school district does a “gentle start” for kindergarten. We met with her teacher for a half-hour last week, when we got to talk to her directly about the diet and Nora’s needs. Then Nora went on Monday for a full day with half of the kids in her class. Today she is there for the first full day with the whole class and it’s the regular schedule from here on out.

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We are happy that Nora is in a school for full-day kindergarten, which goes from 8:15 to 2:40. The kids eat 3 times in that span–breakfast, snack and lunch. Three times the meal packing every day. But we are so excited that it is a Spanish-immersion school, where she will be learning exclusively in Spanish every-other day or every-other week (depending on how the teacher decides it works best for this group). She is in a classroom with one bilingual teacher rather than switching teachers weekly. Nora loves language and has been trying to speak Spanish for a few years, with a convincing accent. I can now leave it to the teacher to give her real vocabulary.

Because there is so much involved with sending Nora to school and the story will be unfolding for the rest of the week and next, I am going to write several blog posts about different aspects of bringing keto to kindergarten.

For now, the only sure thing is our parental perspective. Every parent feels anxiety and excitement at sending their child off on the first day of school. My feelings tend to run toward pride and joy that they are growing up and entering their own worlds. Nora makes that feeling easy because she is eager to join in, with only a trace of shyness or anxiety at the new situation. I don’t have to leave her crying; she leads me right to her classroom and gets herself settled in. I feel fortunate for that.

But she has lived a sheltered keto-life. She was enrolled in preschool when her epilepsy was at its worst in 2011. We took her out of school and hired a nanny, our beloved Laura, to care for her at home when I was at work. Laura has been with her ever since. She has had a dedicated adult with her to open containers and scrape out dishes for all of this time. Now taking her to school means that she doesn’t have that kind of one-on-one supervision, which raises anxiety about whether she will eat all of her meals as prepared for her, while resisting any temptation to share food from other kids.

We are also retelling Nora’s story over and over again–to the school nurse, to the teacher, to other parents that we are meeting or don’t know well. I brought in the newspaper article about her 1-year seizure free anniversary because it’s an easy to read explanation and lends it legitimacy. And every time I say that she is doing so great now, we are feeling confident that she will continue to stay seizure free, I want to knock on wood or throw salt over my shoulder. Those feelings of anxiety are lessening as time goes on, but they are still there. Bringing her Diastat prescription to the office just in case she has a prolonged seizure is a prudent and necessary step, but brings up frightful images of seizures at school that I don’t want to see in my mind. For all of the hope of the last 20 months, there is still the fear of a relapse. Somehow we have to continue to hope for the best and prepare for the worst, which is front and center during this transition.

To cope with that anxiety, I have looked for strategies to make her meals as simple as possible and ease any social issues that she will feel. Even though the adults are supposed to watch out for her (more on that in another post), I would rather avoid the risks by making everything as independent for her as possible. Then she can also avoid a little of the stigma that may come from being “different” (more on that later too). Other kids will bring their own lunches too, so if Nora can sit down, open her own meal and eat it all herself, all the better.

IMG_4096I baked a lot over the last weekend to store up some easy high-ratio finger foods rather than relying on liquids like cream or oil to achieve her 3.5:1 ratio. We are trying not to include too many foods that require eating with a spoon so that there is not much left behind in the dishes. We are also trying to avoid anything that can spill easily, which would most likely be cream and critical to keeping her ratio where it should be (more on that later too).

All of this comes at a time of transition for everyone on our family. Anders is also back at school. Both kids are playing soccer this season, Ted and I both work at OSU and are preparing to teach again this fall. I was off all summer, so I was preparing Nora’s meals as we ate rather than preparing and packing the night before in a lunchbox. New routines means that everyone is a little off-kilter as we get busier, and everything is a little more rushed and a little more difficult.

Did you ever have one of THOSE keto-baking nights? I had one last night. Sometimes it is harder than usual. I was trying to make Nora’s pumpkin bars (which, if I have not raved about them yet, are at http://ketocook.com/2012/10/03/pumpkin-cheesecake-bars/). They have been a staple in the breakfast rotation for the last year and are so good. I always start measuring with eggs because I try to hit some multiple of the recipe based on getting the eggs to come out even. I hate storing and wasting eggs.

By my version of the recipe (altered a bit to get 3.5:1 for Nora), I cracked 3 eggs and came out pretty even at making 18 bars. That was a fairly reasonable number; next I went to the computer to calculate how much of the rest of the ingredients to add. Then I went to add the macadamia nuts. I keep some ground in the fridge for easy cooking, but of course I was almost out. Got out the food processor to grind more. Done with that. Measured a few more things…now my small jar of coconut oil was almost empty. Got out the 5-gallon jar to refill the small one. Always a messy job. Poured a glass of wine (I already did the math, so it was good timing). Finished measuring everything out and put it in the mixer. Went to help Nora out of the tub…came back 10 minutes later with the mixer still on–excellent, the bars will be well mixed. Measured them into individual silicone baking cups, so many that I had to bake them in shifts…then there is clean up. But for a night of baking, we have plenty of breakfasts ready to serve. Beats the morning rush.

Today and tonight we were strategizing about lunch packing, getting ready for tomorrow. It must be fall, for the evenings in front of the gram scale are here.