Nora is 11!

Posted on July 16, 2019 by Christy Anderson Brekken

Nora turned 11 in June, which is a lucky birthday because it is her favorite number and the year that witches and wizards get their admissions letter for Hogwarts…still waiting on that! There are many books focused on 11 year olds, so it must be an important transition year in a person’s life. As a future author, Nora pays attention to these things. 11 should be a great year!

Nora is now over 7 years seizure free. Her last seizure was in April 2012. We held steady at a 3.5:1 ratio for 2 years after that, started weaning her from the diet in April 2014, then kept her on MAD until she was about 5 years seizure free. You can see the general progression in Nora’s Epilepsy Story. Now she eats like any other kid, making herself mac-and-cheese and snacking on ice cream. We still try to steer her away from sugar bombs (marshmallows, suckers, etc.) and toward sweets with some fat (chocolate!). She still prefers half-n-half on her breakfast cereal rather than milk, go figure. Now we stress that the most important thing is to keep up a health balanced diet.

One concern that I had about the diet was creating control issues with food. There are 2 ways to worry: first, that she would go wild after she was “off” the diet, or second, that she would be super controlling over food into her future and develop an eating disorder. I am happy to say that I don’t see any of those dynamics playing out.

Nora has amazing self control when it comes to snacks and sweets. On the diet, both she and her brother would use strategies to enjoy a small portion of a treat, like putting ice cream into a small bowl and using a tiny spoon to eat it a bit at a time to really enjoy it. She would eat a square of chocolate so slowly that she would get a very characteristic chocolate streak in the corner of her mouth. She usually still has Halloween candy in her room 6 months later. When we were at the Oregon coast last week, each kid got a bag of 10 saltwater taffy, and Nora still had some in her bag when we got home. She has definitely not gone hog wild, and she does not deny herself treats. One reason that the diet went smoothly was her amazing self control, even when she was so young. We all negotiate our relationship to food throughout our lives, but for now Nora seems to have it down.

Nora has grown so much lately, she is getting tall and is still lean. Next year she will go to middle school, continuing with the dual-immersion program with her Spanish language arts class. She still enjoys theater, deepening her writing and directing interests. She recently created an adaptation of the original Alice in Wonderland story. The “readers theater” version that she performed for us was about 20 minutes (perfect), and she has recruited several friends to play the parts while she directs. They set a performance date in September, and based on the sustained interest among her and her friends, I think it will actually happen! Nora continues to amaze and delight us. We are so thankful for her beautiful healthy brain.

And then she was 9

Posted on July 3, 2017 by Ted Brekken

Little Nora is not so little anymore. In June we celebrated her 9th birthday. We also celebrated by updating Nora’s epilepsy story to tell the story all the way to seizure freedom, so please take a look: Nora’s Epilepsy Story

She is healthy and doing well. In a few weeks she will head off with her brother to a 2-week Norwegian culture camp on the Oregon coast. This would have been unthinkable until only the last year or two. I’m a bit apprehensive, but she should be fine. We’ll send some snacks and meals for her, and trust that she’ll make good food choices.

For her birthday cake we enjoyed a delicious cake of Christy’s creation. It was the Chocolate Poundcake recipe, made into full double-layer cake instead of cupcakes. Everyone had a slice. The frosting was cream cheese whipped with a bit of honey and half-n-half to thin it. She specifically requested a pool of chocolate and a strawberry on the top, so we went all out with drizzling melted dark chocolate and cutting strawberries lengthwise to make hearts. For presents she was ecstatic to receive a Hermione wand (from Harry Potter) and a flute.

Nora is healthy and independent. Many keto kids fall behind on their growth, but at her yearly well-child check up she was holding steady at the 50th percentile for height, which is where she has been pretty much her whole life, and 37th percentile for weigh, so she looks long and lean. Maintaining a low-sugar diet seems good for her health overall, as she almost never gets a cold or flu. She wants to be a children’s author when she grows up, with a side-job as a substitute teacher when she is between books. She does have a flair for language and is writing Harry Potter fan fiction (no spoilers).

I don’t worry about her so much anymore, at least with regards to seizures. Well, I don’t worry perhaps, but I do still think about it from time to time. Once or twice a week when I’m at work I’ll wonder what she’s doing and if she is OK. I’ll still imagine that the phone might ring and it will be from her school. But then that doesn’t happen and I take a breath.

Keep going Nora. And Happy Birthday!

Chocolate Poundcake and Nora is 8!

Posted on June 30, 2016 by Christy Anderson Brekken

Nora is 8 years old! She had a fabulous birthday celebration with friends. Her artistic side is shining through, with musical theater as her birthday party theme and top summer activity. With a little moxy and a lot of help from our friends, we pulled off an impromptu version of Suessical the Musical, with Nora playing Gertrude McFuzz and singing the songs herself. Her birthday wish came true and she was fabulous!

The birthday week also brings check up time: we paid a visit to her regular pediatrician, who finds Nora in perfect health and 50th percentile in height and weight. The keto diet did not seem to slow her down after all of those years. We also visited the dentist who gave her a clean bill of dental health. Back in the keto days she got several fillings, which I still wonder about–could it be that her saliva was more acidic like her blood at that time? Because it certainly was not related to sugar consumption!

Nora is now over 4 years seizure-free and it has been about 1 year since she officially moved on to the Modified Atkins Diet (MAD). She still eats like she is on MAD, but we don’t weigh or measure food. Our new rule is to restrict all refined sugar and carbs, which is how we should all be eating for health anyway. As a matter of fact, it’s how our whole family has learned to eat – almost, her 11 year old brother doesn’t restrict himself in all settings – but at home we eat whole fruits, veggies, nuts, eggs, meats and dairy.

This Chocolate Poundcake recipe has been our go-to cupcake recipe for about a year now. I make a big batch and frost them with cream cheese whipped with a drop of vanilla and a splash of cream, then freeze them for birthday parties. I also make sure to keep several in the school freezer for those days when a classmate brings in a treat. Nora’s teacher sends her down to the teacher’s lounge to take one out of the freezer in the morning, then she’s ready to celebrate with the rest of her class when they have a special treat at school. These cupcakes are moist and chocolatey, just as rich and delicious as a cupcake should be.

The MAD version is 1.45:1 ratio, but topped with whipped cream cheese the ratio is even higher – which is great! To make the keto version with a higher ratio, I have included substitutions and nutritional facts below. We’ve also made these in other flavors, for example, omit the cocoa powder and add bits of raspberries for vanilla-raspberry muffins. Use your imagination! This recipe was adapted from The Joy of Gluten-Free, Sugar-Free Baking.

Chocolate Poundcake Nutritional Facts, 1 cupcakes (makes 10) from www.caloriecount.com

Chocolate Poundcake Nutritional Facts for 1 cupcake (recipe makes 10) from www.caloriecount.com

MAD Chocolate Poundcake
Makes 10 cupcakes

1 2/3 cup (180 g) Almond meal
1 Tbsp (10 g) Show Me the Whey Protein Powder (could substitute other brand)
1/2 tsp (2 g) baking powder
1/4 tsp (1 g) salt
1/4 cup (20 g) cocoa powder
2 large (100 g) eggs
1/4 cup (60 g) Whole Milk
1 tsp (5 g) vanilla extract
6 Tbsp (80 g) butter, melted
1 Tbsp (20 g) honey

Preheat oven to 350 degrees and set out 10 silicone cupcake molds on a baking sheet.

Mix together the dry ingredients–almond meal, protein powder, baking powder, salt, cocoa powder. The almond meal can be clumpy, so break it up and mix well.

In a separate bowl (your stand mixer, if using one), measure the eggs, vanilla and milk (or cream, see below). Mix on low to combine wet ingredients. Meanwhile, melt the butter in a microwave-safe bowl, then add the honey to the melted butter and combine. Add the butter and honey to the mixing bowl and combine with the eggs and honey. Then add the dry ingredients to the mixing bowl and mix on medium for 1-2 minutes, until well combined.

Scoop batter into 10 silicone muffin cups (49 grams each). Bake for 10 minutes, then rotate baking sheet and cook for another 10 minutes, until a toothpick comes out clean.

For the keto version, substitute heavy cream for the milk, and stevia for the honey (liquid stevia will go in with the eggs, cream and vanilla, powdered with go in with the dry ingredients). With those substitutions, each cupcake will have 47 grams of batter, 2.9 g carbs, 6.5 g protein, 19.2 g fat, for a ratio of 2.04:1. Use your favorite keto frosting to bring up the ratio of the whole treat.

Nora Update & Lemon Bread

Posted on January 23, 2016 by Christy Anderson Brekken

Nora and her prosciutto-pear pizza, crust made from a Mission Carb Balance tortilla.

Nora and her prosciutto-pear pizza with olive oil and mozzarella, crust made from a Mission Carb Balance tortilla.

How did 2016 sneak up on us? I have been meaning to write an update for months, but busy family schedules just kept pushing it back. It’s also a case of “no news is good news,” because Nora is happily humming along with her Modified Atkins-style diet, growing and learning and being her true self.

In our last diet update about 9 months ago, we were still holding carbs to 40 g per day and weighing carb foods on the gram scale to make sure that we were not exceeding that limit, but allowing unlimited protein and fat and not calculating the ratio anymore. Now we are not weighing anything (except for making a few recipes where I still find it easier to weigh than to measure in volume, but it is rare).

We are thinking of this as the long-term maintenance phase of Nora’s diet and have taught her to eat by a simple rule: If you have a sweet food, like fruit, match it with a protein/fat food, like cheese or nuts. We are so fortunate that she has made her food choices part of her identity. I don’t worry about her cheating when she is out of our sight. She goes to friends’ houses to play and I know she will make good choices. She is making new friends and I realized that I forgot to tell the parents about her diet limitations on the first visit. We are also fortunate that we live in a time when people are very sensitive to food allergies and don’t question food limitations, and sometimes even ask up-front.

Nora was Pippi Longstockings for Halloween! She has a flare for drama and adventure! The Halloween Fairy took away her candy and left her a “horse head on a stick” (Nora’s words!), now named Eponia.

Nora still does not get foods with added refined sugar or other starchy foods, like crackers. Gluten-free is a good rule of thumb, but many gluten-free foods are full of just another kind of starch and are not a good choice, and conversely, her low-carb tortillas do have wheat in them. A rule of thumb that I follow for meal choices is to look for paleo products and recipes because they tend to be lower carb, while still reading labels. We are also fortunate to live in a time when there are so many healthy low-carb options at our fingertips.

Nora still feels like she is on a special diet, just a bit, but because of the many special diets in the world she doesn’t feel like such an oddball. I still make fancy cupcakes and store them in her school’s freezer in the teachers’ break room, so that if the class has a birthday celebration she has something special too. She doesn’t seem to mind at all and had one last week–the only evidence I had of it was the wrapper that came home. I send along a treat to a birthday party, or pack extra healthy snack for her and friends if they have a playdate. For her birthday, we made 3-layered fruit popsicles for her backyard pool party with no added sugar. We are finding lots of things that work for everyone now that her diet is so much more relaxed. Nora’s food is still part of daily life, but it is much easier than before and the rest of life has taken over our time and energy.

We made our snickerdoodle recipe to share for Christmas treats.

We made our Snickerdoodle recipe to share for holiday treats.

She also has very fond memories of her special diet. Just last weekend, she took the Keto Cookbook off the shelf and was reminiscing about foods that she wants to make again and wanted to try some recipes that we had never tried! That book was such a gift to us when we first started. I remember lying in bed with Nora after we got it, looking at the pictures of the food that we could make on her special diet. She could imagine pretty delicious things and be excited about food.

One new recipe that Nora and friends like is this Paleo Lemon Bread, adapted from Good Morning Paleo by Jane Barthelemy. I picked it up at the library–it has several good ideas for breakfast and lunch. This comes together quickly in the food processor, but you can mix by hand as well. They freeze well so we make a big batch and take them out as special snacks for a trip or outing with friends. She is still devoted to her MAD About Granola with half and half for breakfast, which is one recipe I still make religiously, twice per month.

Nutritional analysis for one lemon muffin, by www.caloriecount.com

Paleo Lemon Bread
Makes 24 servings
Ratio: ~1:1, 4.8 carbs/serving

1.5 cups (170 g) almond meal/four
1 tsp (5 g) baking soda
1/4 tsp (1.5 g) salt
3/4 cup (200 g) Coconut Butter
5 large (250 g) eggs
1/3 cup (80 g) lemon juice
1 tsp (5 g) apple cider vinegar
2 tsp (9 g) Vanilla Extract
1/4 cup (85 g) honey

Preheat oven to 325 degrees. If using mini-loaf pans, line with parchment paper. Or set out 24 silicone muffin cups to bake.

Place almond meal, baking soda and salt in food processor, pulse to combine. To measure the coconut butter: it will be solid at room temperature, so scoop out to measure by weight, or melt it by warming in the microwave or in a bowl of warm water to measure out 3/4 cup. Add to almond flour mixture and combine well. Add eggs, again pulse to combine. Measure the remaining liquid ingredients in a separate bowl (it can help to warm the honey also), and add to the food processor. Combine all into a thick batter.

Bake in 2 mini-loaf pans 20-25 minutes or in 24 muffin cups for 15-20 minutes. Remove when slightly brown and a toothpick inserted in the center comes out clean.

If you want to reduce the carbs, reduce or eliminate the honey and add no-carb sweetener. You can also add a few berries to each muffin before baking for an extra pop of flavor.

Caring for the Caretakers

Posted on August 16, 2015 by Ted Brekken

“In the event of a sudden loss of cabin pressure, oxygen masks will automatically descend from the ceiling. Grab the mask, and pull it over your face. Fasten your own mask before assisting others.”

I want to write about what the caretakers, the parents, the loved ones, feel when our children are affected by epilepsy. My goal here only to relay what it has been like for me, in the hopes it is helpful for someone. It seems each caretaker responds a bit differently to this situation. For me the experience has been, at its worst, highly emotional and exceptionally difficult. In the most difficult times, I greatly depended on hearing the perspective of others who struggled too.

Epilepsy is terrible. Seizures are terrible. They are frightening, disruptive, and can be dangerous. They are a demonstrative indication that something is wrong. Part of me hates them. I hate the way they look and sound. It connects to some very primitive part of my brain — probably the same part that recoils at the sight of blood, or a grotesque injury, or the macabre — that says “something is very wrong.”

Nora’s seizures were the most difficult thing I’ve ever dealt with. They triggered a primal response within me to defend her. I felt as though she was under attack, that there was a monster with her or within her. I would daydream that I could make the monster real, something I could see or touch, something I could pitch all of my fear, anger, and frustration against. But I couldn’t do anything for the seizures but wait and watch. So I took data; lots of it. I recorded the number of seizures she had in the morning, afternoon, and evening, as well as the medication dosages, how she slept the night before, whether or not she had a nap, what foods and supplements she had. I made models of pharmacokinetics to estimate how much medication she had in her blood at any hour of the day. I ran regression analyses to try to determine correlations to seizures with any of those factors, even including some time lag factors. At the end of each day I updated my plot of the number of seizures per day. Data keeping was a way for me to feel like I could do something.

One of the most challenging aspects of adapting to the new reality was that it was always changing. It was a roller coaster. First there was the shock of the initial tonic-clonics, then a period of hoping it was an isolated incident, then the disappointment of their recurrence, then the appearance of the myoclonics, again the hoping it was isolated, then learning about the terrible prognoses that myoclonics can signify, then an improvement in seizures as we changed medications, then a steady march of the myoclonics’ reappearance and worsening. Each brief period of relief and hope dashed with growing evidence that this was not going to be easy, that Nora may be impaired, that we will have to adapt to life as parents of a special needs child. I’m not a superstitious person, but I began to feel that to dare to hope or smile was just to invite the pain of falling when those hopes were dashed.

Mornings were the hardest. I woke up each day on the edge of tears. I would lay there in bed, waiting to hear Nora’s feet on the floor as she walked to our room to cuddle with us for the 15-30 minutes or so before we got up. The daily seizure count started almost immediately. As Nora laid with us, she would typically have 1 to 3 myoclonics. Time to get up. My feet felt leaden. “One foot in the front of the other” I told myself so many mornings. I trudged to the kitchen to put the tick marks on the refrigerator whiteboard, already anticipating if the daily seizure count would be above or below normal. If the trend was down, or up.

I was teaching a course that term — power electronics. I remember many mornings standing before my students as they chatted with each other in the minutes before the start of lecture. I would have my face down, pretending to read my course notes as I fought back tears. Take a deep breath. “OK class, let’s get started…”

I started to break under the constant pressure and stress. The first and only genuine panic attacks I’ve had in my life started coming. I remember one morning when she was a few weeks in on the switch from Keppra to Depakote. As we made the switch, her seizures dropped dramatically. She even had a few seizure free days. But then they started back. A little bit more each day. This was the most devastating time for me. There was no sugar-coating it: it was very bad news to have the myoclonics marching back through the new drug. This particular morning I was getting ready to leave and happened to glance over at her as she played near the couch, just in time to see a myoclonic. I felt the rush of hormones; the involuntary chemical cascade that tightened my chest and made me feel nauseous. I remember pacing back in forth in one spot and clenching and unclenching my hand. I felt like I was going to pass out. I felt uncomfortable in my skin.

I started to find it hard to be around Nora. Of course I loved her as much as always, but I just couldn’t handle the seizures. I would eat dinner standing in the kitchen instead of sitting with Christy, Anders, and Nora at the dinner table, as the dinner table seemed to be a prime time for seizures. Christy started to feel the stress of my stress too. So I started to branch out. I got much help from my other family friends, and I also started going to see a professional counselor to help me with anxiety management. Another excellent resource that really helped me was Michael Koskie’s book “Diet for Seizures,” which discusses his family’s use of the Modified Atkins Diet for their daughter. He has a section in the book on the emotional impacts to the parents that was very helpful.

When we switched to the diet and Nora improved, it brought me the much needed time and space to heal. There are still times when I feel the anxiety and fear come back, particularly if Nora is twitchy in her sleep, or if she is sick. But on the whole I’ve gotten much better, although it has taken a lot of time and persistence.

So we want to say to those whose hearts ache for their children and the uncertainty of their well-being: it’s going to be OK. Even if you don’t see how right now. Trust me. You are going to be OK. Your little girl or boy is going to be OK. It might seem so hard and scary right now, but it is going to get better. That doesn’t mean there won’t be more challenges or more seizures, or that it won’t take a while more. But it will get better. Keep going. Breathe deeply and keep going.

Misc words of wisdom:

Kids are really, really tough. They don’t feel sorry for themselves. They just keep going. Take inspiration from their energy and happiness even in the presence of seizures. I remember being with Nora in the emergency room between tonic-clonic seizures (she had one about an hour prior, and there was one coming in just a few minutes, although of course I didn’t know it) and she was examining my cell phone with such interest. I felt sad and scared, but she didn’t care that she had just had a seizure. She wasn’t sad or scared. She was being an inquisitive child, as always.
Each hard moment you make it through is one less on your path. Your child is going to have X number of seizures between now and seizure freedom. Each seizure means there is X-1 left. Each day you make it through brings you and your child closer to better medical knowledge of epilepsy diagnoses, causes, and treatments.
It’s OK to be angry, sad, and scared. Stop and cry and when you need to. When it is time to get going again, put one foot in front of the other. One day at a time, one hour at a time, one step at a time.
Use your friends and family to give yourself breaks from epilepsy care. It doesn’t mean you won’t stop worrying or constantly checking your phone, but it will do you good to get out of the house and in the company of others (e.g., your work, your friends, your hobbies) for a while.
Though it can be hard, be grateful for what you can. It can always be worse.
If you have a partner or spouse, recognize that sometimes the stresses of epilepsy will stress your relationship too. Take care of each other.
Go see a professional counselor. Your medical plan may cover it. A counselor will be able to hear you out and share specific stress management techniques that your partner may not. Counselors helped me with anxiety management.
Your child’s condition is not your fault, nor anyone’s doing. Human physiology is complicated and messy and sometimes things go haywire. What’s happened has happened and that’s that. There is no meaning to it. Having kids is tough business. We have no guarantees on their safety and well-being. When we have kids we take our hearts and put them outside of our bodies, at the mercy of entropy and the unknown. All you can do is the best you can do to care for them and love them.

Keep going. Breathe and keep going.

Any words of wisdom from other parents and those affected by epilepsy are most welcome in the comments.

March 2015 Keto Clinic Appointment

Posted on March 18, 2015 by Christy Anderson Brekken

We visited Dr. Wray at Doernbecher yesterday for Nora’s 6-month Keto Clinic appointment. She is now 35 months seizure free and weaned to the Modified Atkins Diet. As usual, she ran through the standard clinic neurological checks and passed with flying colors.

Her blood and urine tests still have a few remnants of the diet that we hope will continue to resolve as we continue to liberalize her diet. Her blood acidosis level is still a little high and she still has the beginnings of kidney stones. The treatment for both of those issues are compatible and simple: plenty of water intake, and we can add some dietary citrate. I’m still doing some research into the citrate options; she already takes calcium citrate and we will have to decide if we start supplementing with magnesium or potassium citrate.

We will continue to wean her from the diet slowly by changing how we administer the diet. At this point, she is getting 40 grams of carbs per day and has no limits on protein or fat. We are only weighing and tracking her carb intake to make sure that she doesn’t exceed her 40 g limit, but we are not tracking her daily ratio anymore.

Our next step will be to estimate carb portions, much like diabetics are taught to do. Then we can shoot for an estimated 8-10 grams of carbs per meal, 5 times per day (still plenty of snacks in her day). We will give up the precision of the weighed foods, with the understanding that her carb intake will fluctuate more from day to day but will stay comfortably lower than a traditional US diet.

Nora will not see a big difference in her diet, but I hope that it frees Ted and I a little more. We have appreciated our little friend the gram scale, but I look forward to throwing together quick meals without consulting the spreadsheet and the scale first.

This is also an opportunity to start teaching Nora to feed herself. She would love more freedom and has appreciated the ability to get herself a piece of cheese anytime she is hungry. As she gets older she will appreciate more freedom, and we all need to learn healthy eating habits for our own bodies.

We have been going back to Doernbecher for check ups every 6 months, and now we will wait a whole year until we go back again, and Dr. Wray thinks that we won’t have to do those big nasty blood draws anymore! Nora is very happy to hear that news!

We do enjoy our trips to Portland. This time Nora wanted to go to the Japanese Gardens and brought her Japanese robe and umbrella that she got for Christmas. We also met up with another keto kid, Annie, who is moving from MAD to a higher ratio to get better seizure control. It is so important for families to support each other through this, because we have so much to give to each other that our doctors and dietitians don’t have experience to help us with: the daily grind of meal preparation and the learning curve. As we continue to wean Nora from the diet and wean ourselves from the gram scale, we plan to ramp up the support group.

We made it a Japanese themed day (on St. Patrick’s Day, no less, but at least we beat the crowds!). We had sushi at Masu Sushi, which felt like a fancy place but was low-key for lunch. Nora can eat edamame and sashimi until her belly is content, and here we found some dungeons crab rolls that both kids adored (Anders got the rice from Nora’s, a win-win).

After lunch we walked down to the renowned Powell’s City of Books. We found a fabulous book of Japanese folk tales, several other books picked by each kid, and a few games. Good times in the big city. Now we will have to plan to come back once and awhile just for fun.

Back to Modified Atkins Diet

Posted on January 7, 2015 by Christy Anderson Brekken

When we began diet therapy for Nora, we started out easier with the Modified Atkins Diet (MAD). We could see that it helped, but didn’t completely control her seizures at the time, so we kept stepping up the ratio over several months until she was on a 3.5:1 ratio ketogenic diet. Now we are through the wean and back to Modified Atkins again. We just keep taking steps and all is well. Still seizure-free, growing and full of energy!

In early December her ratio was lowered down to 1:1, which is Modified Atkins Diet, but we were still calculating and weighing all of her food. When the kids got out of school for winter break we took another step: we are only calculating and weighing the carbs that Nora eats, but giving her any protein and fat that she wants. Although we are still using the gram scale, we spend a lot less time working out each of Nora’s meals and she is happy to eat cheese or nuts when she wants to.

We also moved her up to 40 grams of carbs, just another baby step up, but it has allowed her to have yet more fruits and vegetables.

Eventually we will be estimating all of her foods, even the carbs. But after calculating and weighing to the gram for so long, we realized that we really don’t know portion sizes! We weigh things without really looking at how much is there. We are using this time as a chance to re-learn portion sizes so that we can eyeball meals that will be a good balance for Nora.

Ted reconfigured the spreadsheet that we use to calculate meals for our latest step. Now we enter the number of carbs we want to give her from various available foods, and the spreadsheet tells us how many grams of each food to serve. It’s pretty sweet. He color coded it so that we learn which foods are “danger zone,” “caution,” and “almost-free.” The coding is based on the number of carbs per calories in the food. For example, if she were to eat her whole 40 g of carbs from raisins in a day, she would only get 13% of her day’s calories and would need a lot of other foods. If she got her hands on the raisin box and went to town, she would stuff way too many carbs into herself before she was full. But if she ate her whole 40 g allotment of carbs by eating macadamia nuts, she would get 379% of her calorie needs in the day! In other words, she would naturally stop eating macadamia nuts before she could get close to 40 g of carbs because she might explode. Ted is so clever.

There are several foods that fall into the “almost free” category, which we may just remove from the spreadsheet altogether soon and make them free. Macadamia nuts, walnuts, cream cheese, string cheese, avocado, flacker. Of course, any carb-free food is free too. As long as we get some of these “almost free” and carb-free foods with fat into her every day, we have no problem keeping her at a 1:1 ratio. During the first several days of estimating we double-tracked it using both of our spreadsheets. We calculated her carbs and estimated her meat, cheese and fat portions, then weighed them and put the amounts served into our old spreadsheet to find the ratio over the day. We were easily at or above a 1:1 ratio as long as we were mindful about the basic ratio of each food.

Our Foods by Ratio post has helped us to keep her ratio on track. The big danger-food in that list, in my experience, is cottage cheese. Even full-fat cottage cheese has a very low ratio. During one of our MAD transition days, I gave her a meal of cottage cheese, turkey, and applesauce. I knew immediately that it would be very low fat, so supplemented with some tea and cream and added cream to her cottage cheese too. She actually prefers her “soupy” cottage cheese anyway!

Transitioning her to a more normal diet has been interesting. She loves having more banana and a bit of honey with her peanut butter. Now she eats her MAD About Granola every morning with whole milk! The granola is over 1:1 ratio, so adding whole milk at a 0.4:1 ratio can balance it out to 1:1. Whole milk is still pretty carby; it is in the “danger zone” category of foods but she loves it.

Other new foods get surprising results. I offered her a bit of rice, maybe a tablespoon, equal to around 5 grams of carbs. She wouldn’t eat it! She had a big bowl of edamame instead, and some sweet potato. Another night I offered her a fried Korean dumpling, 6.6 g carbs per dumpling and most of her dinner allotment for carbs. She took one bite and didn’t want any more. It is interesting how her tastes have changed, or maybe she is just nervous about trying too many new things, which is expressed in disliking the food. I’m not in any hurry as long as she is happy.

Although it is supposed to be easier than the ketogenic diet, I remember feeling like MAD was harder because Nora couldn’t eat all of the protein. It is 2-3 times the daily protein requirements for a child her age. Now that she is free to eat or not eat the protein that we serve, she seems happier. Although I still don’t understand how a child can refuse her whole serving of our Christmas ham (honestly, “do I have to eat the ham?” what the heck?). She does not refuse bacon, however.

For Christmas brunch I made the basic waffle recipe from The Joy of Gluten Free, Sugar Free Baking with minor modifications. I was able to use whole milk and the whole family ate it. No more 2-recipe mornings for pancakes or waffles for us!

Nutrition facts for 1 mini-waffle, 29 g of batter. Nutritional analysis by www.caloriecounts.com

Hazelnut Waffles or Pancakes
110 g (1 cup) Bob’s Red Mill Hazelnut Flour
110 g (1 cup) Bob’s Red Mill Almond Flour
2 tsp baking powder
100 g (2 large) eggs
110 g (1/2 cup) Organic Valley Whole Milk

Mix the dry ingredients in a medium bowl and the wet ingredients in a small bowl. Combine and mix very well until the batter has a uniform consistency. Alternatively, you can put all ingredients in an electric mixer and mix on medium for about 3 minutes, stopping to scrape down the bowl. If you are making large waffles, whip the batter well until it is foamy and aerated.

Cook as pancakes or in a waffle iron as usual.

If you like, you can add a no-carb sweetener, cinnamon or nutmeg for flavor. After weighing and cooking some for Nora, I added maple syrup to the batter to make pancakes for the rest of the family.

We made mini-pancakes and waffles, 29 g of batter each, as shown in the nutrition facts. Then each pancake has 2 grams of net carbs and a 1.5:1 ratio. We paired it with ham, a dollop of cream cheese, and blueberries with a touch of maple syrup (wow!). Nora is all about Celestial Seasonings Country Peach tea with cream these days, a nice way to add a little decadent fat as a treat.

Help, Thanks, Wow

Posted on November 26, 2014 by Christy Anderson Brekken

Ann Lamott wrote a book called: “Help, Thanks, Wow: The Three Essential Prayers.” I’m sure she is not the first one to notice. Honestly, I haven’t read the book (yet). But now that I know to look, I’m seeing the pattern.

Exactly 4 years ago, the day before Thanksgiving, we entered the “help” phase when Nora had her first seizure. We saw doctors, started keppra, got lots of help from our community. Then she was seizure free for quite a long time, until they came back and the myoclonics appeared. At this time three years ago we were practically shrieking “HELP!” from the rooftop because nothing was working. Then we found the ketogenic diet, Dr. Wray joined OHSU, and we got started.

It worked. We started her on the Modified Atkins Diet (MAD) and saw improvement. Thank you. After breakthrough seizures we started increasing the ratio. Fewer seizures with each increase in ratio until we reached 3.5:1 and held steady there. Since her last seizure in April 2012 we have been counting the seizure free days. Thank you! By July of 2012 she was weaned off of all antiepileptic drugs and she was growing and developing normally. THANK YOU! In April 2014, after 2 years seizure free, we started a slow wean off the diet.

Now, we enter “WOW.” Almost 3 years on diet therapy, 2 years and 7 months seizure free, and Nora is weaned back to the 1:1 ratio of the Modified Atkins Diet. We have come full circle and are re-learning MAD again. When we do the ketostix urine test at home, she still has some ketones but it is very weak now.

Not that we don’t continue to say “help.” Nora’s kidneys have been acting up again. She complained that her “side hurt,” and when we asked her to show us she put her hand right over her kidney and drew a line around to her bladder. She had a urine test earlier in the week–yep, crystals were present, maybe stones. Maybe a small stone had already passed; we will never know. This isn’t a major threat, but a bummer. We are so close to the end of the diet and she is otherwise great. Skipping is her latest hobby and she is excited for swimming lessons because she likes going in the deep side of the pool now. Her ultrasound was normal, so her pediatrician wants to wait on further testing while keeping her hydrated to help stop any stones from forming.

Normally I don’t get too down about this stuff and didn’t this summer with her kidney issues, but it wears a person down over time. When you know a family with a health problem, especially a child, your heart goes out to them for the anxiety and fear for the beloved one’s health and safety. But one thing I’ve learned is that it is not just the fear of the health consequences, but also the sheer amount of time and energy that goes into coordinating doctors, tests, advocating to get something done in a reasonable time, making sure that lab work contains an order for the right information, sorting out what is meaningful and what it not, doing the research to ask the right questions and understand the answers. I’ve learned the hard way that you should double check things up-front instead of making the trip back to the clinic for another blood draw. I feel grateful that Ted and I are in this together and Nora is such a trooper about it, but at the end of the day it still leaves you exhausted and saying “help” even when there is nothing left to do.

Looking for more reasons to say “thank you” is a powerful strategy. As long as I was in contact Dr. Wray regarding her kidneys, I asked if we could do a blood test to check her blood acidity (see The Blood Acid Chronicles post for more info). She is still taking baking soda dissolved in water twice per day and would be a happy girl if weaning the diet means that she can stop taking baking soda. She was a super champ about the blood draw (despite requiring 2 pokes) and we brought flowers to Erika, our favorite phlebotomist, because she is changing jobs and we won’t get to see her anymore. Erika and I cried, but not Nora. Even after all of that, Nora lost it when I dropped her off at school because she was late. Thank goodness for teachers who say, “I’ve got this.”

The next day we got to “thank you” again: Nora’s blood acidity is back in the normal range. She can wean off of baking soda in the next 2 weeks….IF she has no kidney stones. The baking soda helps to keep stones at bay too. If Nora doesn’t complain about the side pain anymore then we will make sure she stays hydrated and start weaning the baking soda too. Wow!

I can hardly believe that Nora is a 1:1 again. We will continue to calculate and weigh food for the next 3 weeks, as scheduled, to get a feel for MAD portions. Then we will start estimating some meals without weighing if all is still going well. We still have her carbs capped at 38 g per day, which has been the limit for the last 3 weeks. At some time we will start moving up the carbs and down on the protein to try to stay around 1:1, but as we start estimating meals those numbers will be less precise.

We have to feel this out and keep watching Nora, which brings me back to HELP! all over again. Not that there is anything imminently wrong, but I’m holding my breath and hold the hope tight in my heart like a small fluttering bird. I know we have been in the hopeful watching and waiting before as we began the first count of seizure-free days. I hope that one day 3 months from now, then 6 months from now, then 1 year from now the reality of that monumental passage of time will hit me and I will live in a place of Thank You! and WOW! But right now we wait in hope for those days. Help! Thank you! and Wow! all come and go through the same revolving doors through our lives and right now they are making me a little dizzy.

Foods by Ratio

Posted on November 1, 2014 by Christy Anderson Brekken

Continued good news: Nora is down to a 1.25:1 ratio today and still seizure free. We are in the home stretch!

Just a word about the “ratio” for newcomers to the ketogenic diet. Remember that the ratio is the amount of fat per amount of net carbs+protein in a food (and remember to first get net carbs by subtracting fiber from total carbs; fiber is good!).

Example: In 100 g of macadamia nuts, there are approximately 80 g fat, 6 g net carb and 8 g protein. The math:

80 g fat /(6 g net carb + 8 g protein ) = 80 g/14 g = 5.7
Thus, there are about 5.7 g fat for every 1 gram of net carbs + protein in macadamia nuts. They have a ratio of about 5.7:1.

The ratio is a “magic number” in the ketogenic diet, with higher fat telling your body to use fat as an energy source by turning fat into ketone bodies for fuel. The traditional form of the diet uses a 4:1 ratio. Nora’s highest ratio was 3.5:1 for 2 years. Since April we have moved it down by 0.25 increment steps (so 3.25:1, 3:1, 2.75:1, etc.) every 3 weeks.

As we have moved down the ratio step by step, I’ve realized that I have a way of thinking about keto foods by ratio when I am building a meal. In the beginning of the diet, the big challenge is to think low-carb. Then you add in the fat needed to get the ratio. But after doing this for so long and having a broader range of known low-carb foods, I’ve started thinking about foods by their ratio instead of their carb content alone. That helps us create keto meals that use naturally high-ratio foods, rather than taking big doses of fat on the side, and that gets much easier as we move down on the ratio.

The spreadsheet that we made to calculate meals shows us the ratio of each food that we are using, so as we changed ratios over the last 6 months I realized how much I was using that knowledge about the ratios. I hope that explaining it and giving some examples can be a guide to others.

At very high ratios, there are very few foods that are above the keto-standard 4:1 ratio on their own. Fat sources are critical to boost the ratio of any meal. All-fat foods that are served to achieve a high ratio are: heavy cream, butter, oil (Nora takes fish oil, others use lightly flavored oils like canola), and coconut oil for its ketone-availability.

Low-carb foods that Nora eats regularly but have very little fat: berries, red pepper, carrots, popcorn, apples, low-carb tortilla (Mission Carb Balance), sliced turkey or ham. We have to serve enough fat, either through the all-fat options or higher ratio foods in order to meet her fat needs at her current ratio.

Here is a table of regularly-used whole foods organized by their ratio, amounts given per gram of food served. Each color indicates a different ratio range:

Red = greater than 4:1
Orange = between 3:1 and 4:1
Green = between 2:1 and 3:1
Blue = between 1:1 and 2:1
Purple = Less than 1:1, but not insignificant fat content

If you start by thinking about your child’s ratio, you can see the foods that are above and below that ratio. Higher-ratio foods can support or increase the ratio when paired with lower-ratio foods. At the traditional ketogenic diet ratio of 4:1, macadamia nuts and kalamata olives are superstars, with avocado not far behind. But even though you can’t make a 4:1 meal without fat supplementation (actually you could, but it would be a lot of macadamia nuts!), you can choose higher-ratio foods in order to put less fat on the side.

If you move down the ratio to 3:1, you get a few more of those helpful foods. We looked at all of the cream cheese options at our grocery stores and use a brand called Primrose, which has a higher fat content than some other brands.

It’s interesting that there are not many whole foods in the 2:1 to 3:1 range (green) that we use regularly. Sour cream was the only other one in my master list, but Nora doesn’t like it. Some brands of cream cheese fall into this ratio too. Many of the baked goods I make are in the 2:1 ratio because you can mix fats, nuts, eggs, etc., to end up with a 2:1 ratio item.

When we went below 2:1 on Nora’s wean schedule, I realized that there were a lot more foods on either side of her ratio and it got me thinking about foods by their ratios. Now that we are at 1.25:1, Green & Black’s 85% dark chocolate is above her ratio! We can put dark chocolate on berries, maybe with some nuts on the side, and have a perfectly delicious at-ratio snack without a side of cream.

After our next step down in 3 more weeks, Nora will be at 1:1 which is considered the Modified Atkins Diet (MAD) and we can start estimating meals. Knowing which foods are above the 1:1 line, and which are just below the 1:1 line, will help us make combinations of food that keep her meals around 1:1 without all of the calculating and weighing.

This list also shows some interesting contrasts. Just look at the nuts. Macadamia nuts are a stand out by any measure. It is amazing that they stay solid when warm! Walnuts are also excellent. But almonds are pretty far down on the list as a ketogenic diet food. They are not bad, but if I were going to give nuts to Nora I would choose a higher-fat nut that does not require fat supplementation (if possible). Peanut butter is also fairly low ratio, although we would normally think of it as a creamy high-fat food. We have always supplemented it with fat by mixing it with butter. Almond butter is actually a better keto-choice because it is lower carb and higher ratio.

Cheeses are interesting too. Cream cheese has always been the keto diet food of choice. But cheddar (and Monterey jack, which has the same ratio as cheddar), beats out whole milk mozzarella. Both beat out string cheese, which was one thing that was hard to take away from Nora at the beginning, and is not going to be a go-to food even after moving to MAD because it is well below 1:1 ratio. Nora also loves cottage cheese, but it is very low ratio. She enjoys cottage cheese swimming in cream, like cottage cheese soup! It is easier to add fat to cottage cheese than string cheese.

Proteins are the same story. Eggs, pork and beef are higher in fat than chicken and fish, as we all probably know. But even in the chicken category, chicken thigh is 0.42:1 ratio and chicken breast (not listed above), is only 0.12:1 ratio. And chicken thigh is cheaper and tastier, an all round better choice.

There are a few fun discoveries on the list. I love that edamame has both protein and fat. It’s a fun veggie that works on the keto diet or MAD with other fatty foods. Traditional full-fat Greek yogurt is at-ratio right now for Nora! She has it for breakfast every morning, topped with a few berries and some of her granola (the current recipe I made is 2:1 and balances out the berries). The Flackers that she enjoys are now above-ratio too. But even if your child is on a higher ratio, they are a cracker that fits well with the diet and can be topped with a high-ratio food like cream cheese and butter.

No matter where the ratio lands in a diet therapy, you can make meals more palatable by serving some high-ratio whole foods and not putting so much fat on the side. It gets easier at lower ratios when you have a larger selection of foods that are naturally above a 1:1 ratio. These are natural, healthy foods for any body and even better for anyone on a diet therapy for epilepsy or other medical reason.

Fall Keto Clinic Visit

Posted on September 17, 2014 by Christy Anderson Brekken

We traveled to Portland yesterday, fighting the morning traffic for Nora’s keto clinic appointment. Nora continues to thrive and we delight in Dr. Wray’s obvious delight in her continued good health and seizure freedom. He ran her through the clinical neurological tests and we talked about lab numbers and other questions. Audrey, her dietician, said that Nora has one of the most beautiful growth charts of all of her keto kids. Knuckles all around! By the way, knuckles are the new handshake if you want to avoid illness this winter. Now you are in the know–pass it on.

It’s been a little while since we have given an update here, so I will catch you up. We continue to wean Nora from the keto diet a bit at a time. Better yet, she is still seizure free, 29 months running. Since the previous post, we brought her down to 2.25:1 for 3 weeks, then 2:1 for another 3 weeks. That was the last step in her wean plan before this keto clinic appointment. Yesterday we got the next steps in the plan, which I have scheduled at 3 to 4 week intervals:

9/17-10/11: 1.75:1 ratio, 120 g fat, 33 g protein, 35 g carbs
10/12-11/1: 1.5:1 ratio, 116 g fat, 42 g protein, 35 g carbs
11/2-11/22: 1.25:1 ratio, 111 g fat, 50 g protein, 38 g carbs
11/23-12/13: 1:1 ratio, 104 g fat, 65 g protein, 38 g carbs OR 104 g fat, 50 g protein, 54 g carbs OR somewhere in between (explanation below)

After 12/14: 1:1 ratio via Modified Atkins Diet (MAD); unlimited protein, approximating meals instead of weighing to the gram.

The plan was always to move to MAD, but seeing what that means for Nora became more interesting based on our current wean trajectory. The first weaning steps had her protein increasing to get her up to the recommended daily intake of protein for a child her size, which is around 26 g of protein per day. After she hit that target, each wean step increased her carbs and decreased her fat, keeping total calories the same. At 2:1, she was getting 35 g of carbs each day. As we continue the wean, you will see above that the protein is coming up again, while the carbs stay the same for awhile. Then when we hit the target of 1:1 we have some options for the mix of carbs and protein.

The interesting part: if a kid is on the Modified Atkins Diet as a stand-alone therapy, they cap carbs at 10 g to 20 g per day, which is less than Nora is getting right now. Because we are coming off of the diet they took the route toward a more normal diet first and favored increasing carbs, but that isn’t exactly the route to ending with the MAD therapy. Thus, as she continues to wean off the keto diet, we will now do a little course correction and increase her protein again, but there is no reason to take away her extra carbs if she is tolerating them well. And she is not only tolerating them well, but genuinely enjoying them! It has been wonderful to have a higher carb allotment during our summer fresh fruit season. Nora has enjoyed peaches, plums, pears and melons this summer, and just added back some bananas because she really wanted to try them again. We’ve even added a gram or two of honey to her steamed cream and toasting bread with butter. She gets enough carbs to enjoy that little bit of sweetness.

Following the schedule, her carbs will inch up a bit again by Christmas break, then we can slowly make adjustments between the carbs and protein if we want to go higher on her carb allotment. That will be our decision to make when we get there. We will also be able to start experimenting with approximating meals instead of weighing, which we will probably do gradually as well. We will be able to give Nora an idea of the foods that she can freely eat on MAD, given that her protein will be unlimited. But even now we increase her protein and match the fat needs if she is hungry. She has never been on a calorie restricted form of the keto diet.

Nora visits Ramona Quimby (from Ramona the Pest, by Beverly Cleary) at Grant Park in Portland.

In a funny twist of freedom, Nora ended up with an approximated lunch yesterday because we forgot to bring the scale to Portland with us! We planned for lunch at the McMenamin’s Kennedy School, where the Ted and the kids watched “How to Train Your Dragon 2” in the theater-pub. Nora had the hamburger kid’s meal, which comes with a side of carrot sticks and apples if you ask for them (normally it will come with celery as an option, but Nora doesn’t like celery even though she can eat it freely!) We had the meal all calculated, and brought cream to drink on the side, but no scale. Ted did a great job of estimating the hamburger and veggies and Nora was just fine.

Now that I am writing about this end-stage to the wean, I wish I had more time and quiet to talk with Dr. Wray about it. He took the kids into the hallway to do the walking/running parts of the neurological test and we got a chance to talk to Audrey about the wean, but I have more questions. I want to talk about the difference between the typical MAD breakdowns with so little carbs, and Nora being on higher carbs. I’m not sure if we are still shooting for mild ketosis or if we should expect her to come out of ketosis if we push her carbs up to 54 g in the final 1:1 option. In the end, the real answer is: “We don’t know. Nora will show us what works for her.” That’s the right answer because everyone is different. But it still helps a parent to talk it out in a little more detail for your own kid. That’s always a take-away from these appointments for me: to be extra prepared in thinking through the questions and taking extra time to develop questions in the moment.

And it sure would help if the kids were not in the room making a racket. We cram the 4 of us and 3 of her keto team into a small exam room, and my brain stops functioning efficiently. But that’s my problem, and it’s not treatable by modern medicine. Just a little more mindfulness.

We will have another appointment in March and are free to ask questions along the way. In one more bit of good news, Nora might be free of blood draws for some time and can start scaling back on the baking soda when she gets to 1:1.

There are a few more summer highlights to catch up on, things I could have blogged about but didn’t have much to report in terms of lessons-learned. We traveled to North Dakota to visit family for the first time since starting the diet. We got a cat and named her Gracie. We went camping, visited friends in La Pine and spent a week at the Oregon coast. We ate our rooster, Freddie, and enjoy eating the eggs from our hens, Sparklebeak, Starfall and Solveig. Nora is in first grade and started taking piano lessons. We hope she learns some Spanish this year to put her nice accent to use. Nora still loves to sing and dance. She is a happy kid, and that’s what really matters every minute of every day.

Oregon Keto Kids

Ketogenic Diet for Epilepsy

Category Archives: Nora’s History