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 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.