Bringing keto to kindergarten, part 1

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.

 

Feeding our kids, ourselves

One of the most common questions that we hear from people who learn about Nora’s diet, or who have known that we have been doing this for 20 months, is this: Do you eat like Nora too? How has your diet changed?

Simple beautiful keto meal. In the cup is a little poached egg (one of the first from our own chickens!) swimming in heavy cream. Nora also had fish oil and her cytra jello on the side.

Simple beautiful keto meal. In the cup is a little poached egg (one of the first from our own chickens!) swimming in heavy cream. Nora also had fish oil and her cytra jello on the side.

This simple answer is this: Yes, we eat like Nora because we eat the same foods. Cheese, avocado, nuts, red pepper, berries, meats, eggs, cream, butter. But we don’t measure our food or eat in the same proportions as Nora does. We can have a fresh and simple family meal from mostly the same foods, but Nora has less fruit and a side of heavy cream. I’ve included several keto meals from this summer that were so pretty I took a picture.

I’ve noticed that as we have been so intensely focused on feeding Nora for her health, we have migrated to healthier eating patterns ourselves. Most people recoil at the fat-laden ketogenic diet and have an automatic association that fat is unhealthy. But there is more to the ketogenic diet than adding fat, and fat is not inherently unhealthy. It is an essential macronutrient that we all need. Our bodies’ interaction with food is much more complicated than fat = bad or carbs = bad…or any other such simplistic notion.

Lovely keto meal at the coast: 1/2 hard boiled egg (white only), baby shrimp in the egg, cucumber, pepper, kalamata olives and bleu cheese dip (recipe to follow).

Lovely keto meal at the coast: 1/2 hard boiled egg (white only), baby shrimp in the egg, cucumber, pepper, kalamata olives and bleu cheese dip (recipe to follow).

I was deeply impressed by the latest pamphlet released by the Charlie Foundation called “Does what I eat affect my epilepsy?” about how diet affects epilepsy even for people not on the ketogenic diet. I was struck by their simple 2-step prescription:

1. Eliminate simple sugars
2. Eat a natural, whole foods diet

These two simple rules are good for every body, not just for controlling seizures. This is what the ketogenic diet has shown us, almost by trial and error. It is impossible to eat simple sugars on the diet. There aren’t enough carbs to give. And that’s been one major shift in our diet too. We rarely eat sweets or sweet drinks. I rarely eat bread anymore.

But it’s not about deprivation. It’s about shifting to step 2, natural whole foods. Now we eat a ton of fruit. It’s a good thing that Anders was already our little fruit bat, with a personal record of eating 7 apples in a day! He loves sweets, but does not expect them daily. A special dessert will be cobbler made with berries, no added sugar, and an oatmal-flax-butter topping with a touch of brown sugar. Of course, Nora has her own separate serving to her specs.

Improvised zucchini torta. I had the same meal! Pan-fried zucchini, cut up leftover pork chop, cheddar, avocado, red pepper, iced tea and cream.

Improvised zucchini torta. I had the same meal! Pan-fried zucchini, cut up leftover pork chop, cheddar, avocado, red pepper, iced tea and cream.

When I started learning the carb content of various foods and giving Nora the best bang for her 10 to 11 carbs per day, I focused on how to load her up on berries and red peppers rather than wasting carbs on empty foods. Sure, she gets 3 or 4 grams of 85% dark chocolate in several of her snack recipes, but I consider those carbs well-spent on pure pleasure, not an empty food. This is not a deprivation diet. And squares of that chocolate bar are my go-to snack when I want something sweet. One or two squares is enough when it is high-quality. For me it’s not about no carb or low carb, but lower carb.

Now get ready, here comes the self-help-infomercial part. I have been reluctant to write this because I don’t want to sound all “rah rah! here’s the secret! you can too!” But it’s the truth, so here it is: In these last 20 months, I have lost 15+ pounds, and so has Ted. We never had a weight loss goal, but found it as a surprising natural consequence of shifting our diets subtly toward Nora’s. We exercise the same, eat the same number of calories (we aren’t counting, but don’t feel hungry), we just eat slightly differently. I put heavy cream in my coffee in the morning because it’s available, and I finally stopped putting in a teaspoon of sugar. It’s been a slow change all around. And I think that’s partially why people ask. They notice that we have slimmed down, we have energy, we feel young and healthy, my last lab work is great despite a family history of heart disease, high cholesterol, high blood pressure and diabetes.

Now that I’ve transitioned to eating this way, I notice the difference when I stray. If I’m at a party and I have a piece of cake, I feel cruddy for several hours. I had a donut at the farmers’ market one day and just wanted to sleep all afternoon. Beer makes me feel bloated and crappy, so I’m sticking to wine and cocktails (that’s right). It takes time to put together those associations and you can only really feel them once you have been away from simple sugars for awhile.

I have to consciously remind myself that I will feel like crap if I eat some cake and it’s not worth it. If Nora is with me it is easy to say “no” to sweets for myself because it is not fair to eat them in front of her and I want to be a good model for her. If she is not with me, it is much harder and I’m learning to just take a few bites or make another choice. But Nora doesn’t get “just a bite.” She has been and must continue to be the strong one. I am teaching her, and she is teaching me.

I met many amazing parents when I was at the Charlie Foundation conference a year ago. We were all wading through the same problems of managing our child’s epilepsy using diet, which is wonderful because it works but introduces so many social and behavioral issues as well. And it is so much daily work for the parents. While at the conference I heard tired parents talking about how they make a meal for their kid, then eat a bowl of cereal or a TV dinner to feed themselves. That made me so sad. They were sad for themselves; they felt deprived.

Parents, it is just as important to feed yourselves healthfully as it is for your kids. You can persevere through this if you keep yourself healthy and strong, and good food is as important to your health as your child’s. Even your kid on the ketogenic diet. And even if your kid is not on the ketogenic diet. Parenting is hard work. You are equally important. When you weigh out a meal, you can make yourself a plate of the same foods, just hold the heavy cream and give yourself an extra serving of veggies and a few crackers or a tortilla. You deserve it. No one should be deprived of good food, least of all such dedicated parents. And it’s really as easy as those 2 simple steps. Start slow but be consistent. Most of all, be kind to yourself.

Peanut Butter Whipped Cream

The Splendid Table on National Public Radio is one of my favorite shows, and it’s based in St. Paul, MN where we once called home. Lynne Rossetto Kasper knows and appreciates her food and the science behind cooking.

A recent post on their website caught my eye: 10 ways to flavor whipped cream. Many of these would not work on the keto diet, and all would need the sugar removed, but it planted a seed of an idea. One day Nora’s lunch had a lot of whipped cream included with berries. Too much whipped cream for her taste (I know, how is that possible?) She also had a little peanut butter with butter mixed in to top a Flacker, so to get the rest of the whipped cream down I mixed the peanut butter in with the whipped cream. Lunch went down just fine.

25 g serving of Peanut Butter Ice Cream with 4 g Green & Blacks 85% Dark Chocolate

25 g serving of Peanut Butter Ice Cream with 4 g Green & Blacks 85% Dark Chocolate

This week I decided to try out a batch of dedicated peanut butter whipped cream made in advance and ended up with 2 snacks: Peanut Butter Ice Cream, and Peanut Butter Whipped Cream. Small difference, but here’s why.

First I tried mixing 10 parts cream to 2 parts peanut butter, but it was too heavy for the whipped cream to hold it and remain fluffy. That batch was turned into ice cream, in 25 g servings. Topped with Green & Blacks 85% Dark Chocolate makes a special treat–you can melt it in the microwave in a little silicone pinch bowl, or shave it into chips with a knife. I tried out some myself. I love chocolate and peanut butter, particularly in ice cream form.

The whipped cream recipe that worked was 10 parts cream to 1 part peanut butter. It has a more subtle peanut butter flavor, but holds up well enough to be called whipped cream. Nora is having it with blackberries today, just because she wants to.

1 serving of Peanut Butter Ice Cream, 25 g. Also contains 0.26 g fiber. Analysis by www.caloriecount.com

1 serving of Peanut Butter Ice Cream, 25 g. Also contains 0.26 g fiber. Analysis by www.caloriecount.com

Peanut Butter Ice Cream
100 g Organic Valley Heavy Whipping Cream
20 g Adams 100% Natural Creamy Peanut Butter
5 g Vanilla Extract

Whip the cream until almost stiff, then add in the peanut butter and vanilla and mix until incorporated. Divide into 5 servings of 25 g each, then freeze.

Remove from freezer 15-20 minutes before serving to let it soften and mix. Top with shaved or melted 85% dark chocolate to reach desired ratio.

Ice cream without chocolate includes 0.26 g of fiber, for 0.64 g net carbs. Ice cream alone is 6.17:1 ratio.

Nutrition Information for one batch of Peanut Butter Whipped Cream. www.caloriecount.com

Nutrition Information for one batch of Peanut Butter Whipped Cream. www.caloriecount.com

Peanut Butter Whipped Cream
100 g Organic Valley Heavy Whipping Cream
10 g Adams 100% Natural Creamy Peanut Butter
5 g Vanilla Extract

Food science experts say that the best way to make whipped cream is to keep everything cold. Place your mixing bowl and beaters in the freezer before you start and keep all ingredients cold.

This time I placed all of the ingredients in the mixing bowl together. Whip for about 2 minutes on high until stiff.

Breaking this out per gram, this peanut butter whipped cream contains 0.01 g net carbs, 0.02 g protein and 0.41 g fat for a 11.84:1 ratio. Serve the an amount that makes an appropriate-sized snack with berries or another food to achieve the proper ratio.

 

GLUT1 test results are in…

Nora’s GLUT1 test was negative, with 91% sensitivity. With no other clinical signs of GLUT1 deficiency in her history (besides seizures and diet success), Nora’s doctor is feeling confident that this is not her issue.

That’s a good thing, because if it were positive she would need to be on a diet therapy for much longer, at least until adulthood. On the other hand, if she were positive we would have a better idea of prognosis into the future. The way would be a little more clear.

All in all, this is very fine news. Nora is still going strong, happy and seizure-free. She’s turned into a delightful 5 year old, transforming into a kindergartener before our eyes.

currantsSummer is lovely here while settling into our new house. I feel close to being moved-in and ready to bake again. Nora has not had any fancy new foods for awhile, relying on her top 15 foods more than ever. That’s all fine and dandy. We got a few red currants from our bush this year and integrated walnuts into her diet. It was an easy way to make something new. She has also liked iced tea, made with a caffeine-free herbal tea and cream.

Happy summer to all!

Keto-Clinic check up, and then she was 5!

IMG_3676Happy 5th Birthday to Nora!

Last Friday we visited Dr. Wray in Portland for Nora’s latest keto clinic check up. She is right on track for height and weight, maintaining both at about the 75th percentile. Many keto kids fall behind on their growth while on the diet, so we are very pleased that she is growing normally.

The initial bloodwork looked good. They detected too much calcium in her urine, so they did another urine test to get more information. We have not heard back about it yet, but if the additional tests show that she is at risk for forming kidney stones we will see a kidney specialist. Fingers crossed.

She also had an additional blood draw at the clinic to test for the GLUT-1 gene deficiency. If she has the mutation, it means that her body cannot adequately utilize glucose for the energy to grow and develop, so she will need to be on some kind of diet therapy for the long term. It would explain the seizures, and also tell us something more about how her development will progress. Dr. Wray said that GLUT-1 kids have a seizure window, and after that will stop having seizures but will have development problems. If she is past the seizure window, we may be able to move her ratio down a bit to relax the diet while keeping her seizure-free and developing normally, but we would not expect to completely wean off the diet for a long time, maybe adulthood.

If she does not have the GLUT-1 mutation, then we keep on and wait for 2 years seizure-free then trying to wean her from the diet. Nora’s first neurologist, Dr. Koch, once said that we would just have to wait and see how Nora’s epilepsy presents itself. Ted and Dr. Wray discussed that sentiment, and Dr. Wray agreed. It’s strange to see a kid with myoclonic seizures that is otherwise cognitively normal and doesn’t have one of the identified epilepsies. We know of a few other similar kids through our blog, but there are not so many that they understand the origin of the problem yet. And even if she has some novel mutation, there are many factors that determine how the genes express themselves. He promised that by the time Nora is ready to have kids, the science will have progressed so much that he will have a much better idea of what lies in Nora’s genes and she can come back and visit him then 🙂

And the next day was Nora’s 5th birthday! We celebrated with salmon sashimi, edamame (lots of cream) and Mexican Chocolate Protein Cupcakes. We had lots of friends over on Sunday for a backyard-camping-style birthday party. Nora led the kids through her planned activities and everyone had a great time. Nora declared it her best birthday ever! We agree. We are so thankful to have a happy and healthy 5-year old Nora.

 

Chocolate Hazelnut Cookies

Spring! The world is blooming and life gallops on. We have so much going on right now that I have not had much time for blog posts or recipes.

Nora and Luna share a moment a few weeks ago. This is when we realized the chicks should get outside before they started exploring the house.

Nora and Luna share a moment a few weeks ago. This is when we realized the chicks should get outside before they started exploring the house.

In addition to the normal spring activities with school, soccer, baseball, piano, friends…we also added four backyard chickens to our brood! They are about 8 weeks old now and looking like little hens. In a few months we will have the freshest of the fresh eggs for keto meals.

In other big busy news–we are moving to a new house! I have been trolling for a house that will give us more space, including a bigger kitchen, and get us on the right side of the busy street we cross daily on our bikes. We also chose a neighborhood with an elementary school that offers full-day kindergarten with a dual-language Spanish immersion program. Nora adores language and will be in heaven there, in addition to the benefits of learning a language when young. We are excited about our move, but it’s adding to an already busy spring.

And in keto-news, Nora’s big news story was intended to get the word out about the keto-diet for other families in the area and it worked! A nearby family contacted us because their little guy was getting progressively worse while on 2 drugs and they had been thinking about diet therapy. After talking with them he really took a turn for the worse and they were able to get in to Doernbecher Pediatric Neurology (the best, where Nora goes) for treatment and started the diet. We feel their suffering while watching their little guy struggle and trying to get the help that they need, and we are thrilled to be able to help them get on the right path. We delivered some keto-treats and shared our support last weekend and he is doing better already. In June we will meet with the keto-team at Doernbecher to official start a support group for families. All good work to keep us busy.

On to Nora’s latest favorite recipe! We’ve had these for months now, and it’s finally time to share. These are also adapted from The Joy of Gluten-free, Sugar-free Baking cookbook, where they are called Chocolate Pecan Cookies. I left some pecans in the recipe, but substituted hazelnuts for most of it because Bob’s Red Mill makes a hazelnut flour but not a pecan flour, and hazelnuts have a little lower carbs per gram. Nora loves them and we hope other keto-kids love them too.

WIMG_3425e started out serving them simply with enough cream cut with water to make “keto-milk.” They hold together well enough for dipping.

On the same note, we also served them as chocolate cereal for awhile, crunched up with “keto-milk” of cream and water. Last time I was down the cereal aisle, chocolate cereal in still in fashion, although I won’t buy it for Anders!

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Next we started serving them as a large snack of 2 cookies with whipped cream in the middle. It’s either like a big Oreo, or an ice cream sandwich if you prep it then put it in the freezer for awhile. Very satisfying. This would make a great snack to send to school for a special treat when there is a class birthday or some other event.

 

IMG_3447Then one day Nora needed a smaller snack so I make a little food art with whipped cream and a tower of strawberries. That was a hit! Nora took this to a friend’s birthday party because I didn’t have the time to make cupcakes. The cookies keep in the refrigerator for a week or more, so making a batch will give you the base for several good snacks.

The cookies are also fairly fast and easy. It helps to have some pecans pre-ground, but it’s a small amount to put in the food processor or coffee grinder, which is my preferred way to grind small amounts of nut or seed flour when needed.

Only 0.8 g carb per cookie, and 2.56:1 ratio! Nora gets up to 3.5:1 ratio with 2 cookies, 12 g whipped cream for 178 calorie snack. For the strawberry stack, 1 cookie, 12 g whipped cream and 10 g fresh strawberries for a 114 calorie snack, 3.5:1 ratio.

Nutrition information for 1 Chocolate Hazelnut Cookie. Nutritional analysis by www.caloriecount.com

Nutrition information for 1 Chocolate Hazelnut Cookie. Nutritional analysis by www.caloriecount.com

Chocolate Hazelnut Cookies
(makes 24 cookies at 14 g each)
10 g Bob’s Red Mill Golden Flaxseed Meal
100 g Bob’s Red Mill Hazelnut Meal/Flour
50 g Bob’s Red Mill Almond Meal/Flour
20 g Rapunzel Organic Cocoa Powder
5 g Baking powder
3 g Salt
20 g Pecans, roughly ground
58 g Egg
50 g European-style Butter, melted
11 g Pure vanilla extract

Preheat oven to 350° F (177° C).

Combine flaxmeal, hazelnut meal, almond meal, cocoa powder, baking powder, salt and pecans. Here, I added a packet of Nora’s Cytra-K for sweetness. Add a no-carb dry sweetener of your choice here.

In a large bowl, whisk egg, melted butter, vanilla, and a liquid no-carb sweetener of your choice if desired.

Add the dry mixture to the wet and stir well until a thick, sticky batter forms.

IMG_3131Weigh out 14 grams of dough per cookie. You can roll them in your hands to make a ball then flatten into rounds, as they will not spread when cooking. Place on a prepared silicone baking sheet or parchment paper lined baking sheet.

Bake for a total of 12-15 minutes, rotating halfway through cooking. Transfer to wire rack and cool at least 15 minutes.

Enjoy!

Nora is big news!

Our local paper covered Nora’s 1-year seizure free anniversary! Front page of last Sunday’s paper! We’ve been local celebrities this week!

Read the story here: http://www.gazettetimes.com/news/local/high-fat-ketogenic-diet-helps–year-old-keep-seizures/article_ca7dc366-6d66-541a-8516-4e87be41c9c0.html

Photo by Amanda Cowan, Corvallis Gazette-Times

Photo by Amanda Cowan, Corvallis Gazette-Times

I joke that our paper loves a good human interest story more than anything else. Rivaled only by the traffic circle controversy, the plastic bag ban debate, and dog custody cases.

Joking aside, we were pleased with their coverage of Nora’s story and explaining the ketogenic diet to a wider audience. From conversations and contacts this week, I know that our story is important to tell in our community.

My goal in contacting the paper is to create awareness about the diet as an effective and doable epilepsy treatment. I think the best thing that we can do is to show other people that there is hope, and to be there to help them heal their kids. There is a big learning curve for administering this diet, but I believe in the power and dedication of parents to make it happen. By passing along our information, we can help to make a difficult thing doable and we can share the load. Our next step is to set up a support group at Doernbecher pediatrics in Portland to help other families figure out how to get started and keep it up. We are tentatively meeting with the keto-clinic staff after Nora’s next appointment–here we go!

If any other keto families out there have tips or tricks for an effective support group–from either the supporting or being-supported perspective, I would love to hear it. I feel like we have an online support group going on here and it has been so valuable to us. It’s time to pass it forward.

I’ve been crazy busy with school and work lately, but I have a few more recipes and ideas that are ready to be published–so stay tuned!

 

One Year Seizure Free!

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

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

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

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

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

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

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

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

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

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

Toasting Bread

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

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

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

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

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

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

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

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

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

Ratio:        2.39:1

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

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

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

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

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

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

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

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

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

 

Don’t call me cupcake…

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

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

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

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

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