And now she is a teenager!

Where does the time go? Our spunky strong little keto kid is now an official teenager. She loves animé, cosplay, and her friends. She finally got to dye her hair blue for her birthday. In our experience, kids take a huge running leap into teen years, then let the time catch up with them.

Nora’s last seizure was in April 2012; she is over 9 years seizure free. She eats a normal diet now, but hangs on to some of her keto habits. She still likes to eat her cereal with half and half, no plain old milk will do. She also takes tiny IKEA playset bowls of ice cream — the same ones you will see in old pictures on the blog — and eats it with a half-teaspoon measuring spoon to enjoy it slowly. She has grown tall and strong, kind and smart.

When she had her first seizures, the doctors hoped it was a fluke. Lots of kids have seizures. But when it happened again, they prescribed keppra. After 6 months, we weaned her off keppra and seizures came back. Then she started having myoclonics…it wasn’t a fluke anymore. We were scared and didn’t find many resources for mystery epilepsy (which is my way of describing her diagnosis: idiopathic benign myoclonic epilepsy). When keppra and depakote didn’t work, we learned that the ketogenic diet was more likely to work than a third drug. Thankfully, Dr. Wray was just starting at OHSU and became her doctor. The diet worked with some trial and error, and her seizures stopped. After 2 years of seizure-freedom on the diet, she weaned slowly to MAD, then fully off, and has been seizure free ever since. Grateful.

We started this blog for all of the parents who feel alone and scared for their precious kiddos. We also started it for ourselves, to document what we were going through and communicate with others. We’ve connected with a lot of parents through the blog over the years, met with a few families, exchanged many emails and texts and phone calls. We see you, and we hope that Nora’s story can be a ray of hope. We know that the diet doesn’t work for everyone and each child has a unique path. Look for the helpers, find support, and be an active member of your child’s medical team. You know your child better than anyone else and you have the strength and ability to help your child. Don’t give up. You’ve got this.

When we asked Nora’s first doctor about the ketogenic diet, he said “it’s really hard.” But you know what’s really hard? Watching your kid have seizures and wondering what that means for their development and life. The ketogenic diet was nothing compared to that stress and anxiety.

But the doctor was also right. The ketogenic diet is hard. It’s a grind. On top of learning, measuring, weighing, calculating, it’s helping your kids through the emotional turmoil of saying “no” to every fun food that other kids are having. It’s helping siblings through the fear and sometimes jealousy when the keto kid gets something “special.” It’s helping them figure out how to manage their own emotions, when you are managing your own. Sometimes the best answer is just to be empathetic. Affirm that this is really hard, and we are doing our best. It’s a good life lesson. Everyone struggles with something.

If your child has epilepsy and you are struggling to find the right treatment, or if you are just learning the diet, or if you are exhausted from the grind over many years: it’s hard. We’ve been there, we know what you are going through. You are doing your best. Be kind to yourself.

If I had to do it again …

I was having a conversation with another Keto parent the other day that spurred an interesting question for me: if I had to re-live the most difficult parts of Nora’s epilepsy, what would I do differently? What have I learned that I would tell my past self if I could?

Float like a butterfly. Have you ever watched how a butterfly flies? They flap furiously, then glide for a short time, then flap again, then glide. They don’t try to keep an even pace. I think that when I was really in the weeds with my stress about Nora’s epilepsy, I felt like I had to “handle” it with grace, that I should be calm and in control. But then when I couldn’t handle it, I felt even worse because I knew I was failing.

In retrospect, I would allow myself more ups and down. I would find people that could listen or validate my fears and anxiety, to allow me to acknowledge my hard feelings so that the “down” phase could allow me to rest and vent. Then I would lean in harder on pursuing things that give me joy and space, so that I had an “up” phase, to pick me up so that I was ready to head back into battle against the anxiety and day-to-day grind.

So perhaps don’t focus on trying to be bulletproof and always on top of everything. The grind will eventually wear you down, no matter how strong you think you are. Instead focus on having strong means of renewal, so that you can keep diving back in. Think of what gives you joy and peace, and lean on those things more than ever so that you can be rested for the hard work. Flap and glide, flap and glide,…

Mediate and breathe. Meditation and breathing exercises don’t need to be fancy. All you have to do is take a moment to interrupt your rumination to give yourself a little break. I was describing this visualization to my therapist the other day: have you ever watched a vortex form at the drain of a bathtub? It starts weakly, then extends down from the surface down to the drain as it builds. But sometimes when the vortex is still just forming, a drop of water from the faucet will fall and interrupt the vortex formation, and it slowly has to start building again. I think of that vortex as my swirling, busy thoughts, and I visualize that drop of water splashing into the vortex, rippling out, and stopping it. I think if we regularly check in with our brains and interrupt these swirling thoughts throughout the day, we can give ourself a little break, and keep from exhausting ourselves. Visualize that drop of water sending a calm ripple across the water of your mind, leaving stillness in its wake.

Be vulnerable but resilient at the same time. This relates quite a bit to the “float like a butterfly” idea, but if I had to do it again, I would be better about telling myself things like: “I know I will get through this, that there is a light at the end of the tunnel, but today has been really hard, and I’m struggling.” It is possible to feel hopeful while simultaneously expressing grief, and it is possible to acknowledge your fears and frustrations while knowing that you eventually make it through. You can live in both places at the same time.

Epilepsy is really hard. Keep going; one foot in front of the other. Each hard day you make it through is one less on your path. Embrace your sources of joy, keep filling your tank, and keep diving back in.

Nora is 11!

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.

Words of Wisdom Worth Repeating

With Nora’s long seizure-freedom, she has become a regular spunky 10 year old girl. We will forever be grateful for the ketogenic diet and the difference it made in her life, and the difference it made in our lives as her parents. I’m still happy to be a supportive friend to any parents who are on this journey with their own child–if you are out there, feel free to comment and we can email or talk.

Now I’m helping a family member on her journey into careful low-carb eating. Her pancreas had to be removed, and now she is diabetic and entirely dependent on insulin. It is essential to get a healthy low-carb eating plan in place.

I revisited our own blog to find some recipes and nutritional information–like leaving myself a message in a bottle! I’m baking a version of the Blueberry Almond Muffins for a healthy on-the-go snack. I will do a lot of baking and freeze lots of low-carb treats!

As I was looking through recipes, I came across this post by Ted: Lessons Learned. Just, wow. Practical tips, plus words of wisdom on navigating the marathon of epilepsy. Marathon makes it sound a little too easy (not that I’m ever running a marathon, sounds hard to me). More like a marathon with archers and club-weilding trolls jumping out of the bushes randomly. They may knock you down, but you get up and keep on moving. If you don’t read the full post, this is the pearl of wisdom for all of us:

It’s not “hard.”  It is different.  If you think the ketogenic diet might help your child, don’t accept any statement that the diet is “hard” as a reason for not trying it.  I wouldn’t say the diet is hard.  Epilepsy is hard.  The diet is a tool that may improve your child’s quality of life and development.  (Remember that if your child has failed two anti-epileptic drugs, the diet is statistically more likely to help than a trial on a third drug. Also, certain epilepsies respond particularly well to the diet.) However, the diet does require some changes to your thinking and expectations.  Once you get your routines down and everyone gets a few months to adjust, the diet is not significantly harder than having other diet restrictions.  Just different.

That is a beautiful, resilient frame of mind for any life challenge. Thank you, Ted. I can tell you in person that you are amazing, but let’s all take a public moment to recognize your amazingness.

We are happy to be a resource for parents on this journey. Leave a comment and we can converse here, or we can be in touch by email.

September is Back to School Time!

As everyone heads back to school, we think about everything our kids need on a daily basis and communicating those needs to their teachers and school staff. When Nora was on the keto diet, we shared our experience in 3 parts:

Bringing keto to kindergarten, part 1
Bringing keto to kindergarten, part 2
Bringing keto to kindergarten, part 3

Now that she is a big 5th grader who has been seizure-free for 6 years (whoo!), back to school time is a little less stressful.

However, she is still a special little one. I got a call from the school district nurse during the first week of school, which took me by surprise. She was again checking in to see if Nora had any new seizures or treatments that the school should be aware of. I was grateful for the call, and reminded of the importance of continuing communication with the people around her. I told them that although we have weaned her from the keto diet, and from MAD, we still think about what “eating healthy” looks like for Nora, which is avoiding high sugar intake–the possible “sugar bombs” that can come with school events (although her school has adopted a smart “healthy snacks” policy that should work for her now too!). Nora is also a pro at evaluating food presented to her, and politely declining if she is in doubt. She also has some preferences developed through her diet experience that we are happy to continue to support.

For breakfast, she asked me to make some of her MAD About Granola about a month ago. However, it largely sits untouched (I eat it with yogurt some days), because she has discovered a kind of cornflakes that she really likes. But she still prefers half and half on her cereal! She has tried whole milk, but doesn’t like it as much. So each day starts with a bowl of cereal with half and half.

She still packs a lunch for school each day, which she does herself. Her Mission Balance Low-Carb tortilla are still her favorite, usually with butter, peanut butter and a drizzle of honey. She often takes cheese and a piece of fruit on the side.

After school snacks are now much more conventional. She loves Coconut Bliss ice cream (preferably chocolate peanut butter) or bars (chocolate). The ratio is quite good, even though it has more carbs than she used to get a day. We have also had apple pie and apple crisp around the house, thanks to our apples and pears trees this year. We are happy to let her eat those homemade treats now, and more open about similar kinds of treats in small servings, preferably paired with some fat.

We are still getting used to the idea that she can eat a typical diet, although we want to hang on to the healthy aspects of the keto diet. It’s a nice lesson to reiterate that a healthy diet is low in sugar. But I don’t want to give either of our kids food/control issues as they enter their teen years. We continue to strive for a healthy relationship with food, remembering that “healthy” can mean something different for everyone, depending on their food allergies, intolerance, treatments, and preferences.

Managing Stress

Caring for an epileptic child is extremely stressful.  Not only do you have the immediate stress of not knowing when the next seizure hits, but you have the long-term stress of uncertainty about your child’s prognosis and development.  I’ve written a bit about this before ( and today I’d like to add a few more specific steps you can take.

First, understand that you are not alone.  There are millions of people in the world dealing with epilepsy.  Somewhere in the world a child had their first seizure today, and the parents and caretakers are freaked out.  Somewhere in the world there are parents and caretakers that are worn down, stressed out, and sick with worry.  It’s OK to feel that way.

If you have an epileptic child, let me say I am so sorry.  I am sorry you have this uncertainty and stress in your life, and that you are so worried about your child.  We hear your pain because we feel it too.  We are with you.  We can walk this road together.

Second, practice breathing exercises to keep your stress in check.  When I was really, really struggling with Nora’s epilepsy, I started experiencing panic attacks.  I went to see a counselor and she showed me that, by breathing deeply and making an effort to relax my body, I could actually make it impossible for my body to develop a panic response.  By breathing deeply and slowly, you are forcing your heart rate to stay down; you are manually intervening in what would otherwise be an autonomic response.  That doesn’t mean you are not upset, or sad, or angry, but at least it keeps you in control of your body.

You don’t need any fancy books or videos to learn how to breathe.  The technique that works best for me is to draw in a breath, and release that breath in twice the time.  For example, start with drawing in a breath for a count of 4 seconds, then count to 8 seconds as you exhale (for a total of 12 seconds).  If this feels comfortable, go to a 5 second inhale and a 10 second exhale.  Keeping adding 1 second to the inhale and 2 seconds to the exhale until you reach a level that feels very comfortable; you don’t need to push it or make yourself uncomfortable.  (Pro tip: the breathing doesn’t need to be even.  I like to inhale evenly with a sharp full inhale at the end to top-off my lungs, and the same on the exhale, evenly, with a strong final push to clear my lungs before the inhale.  This trick uses the full lung capacity regardless of the breath time.)  Keep breathing this way for 5 minutes or so.  This simple technique will keep your heart rate and blood pressure down, thus actively interrupting your flight-or-fight response.  It’s not going to make you feel happy if you are sad, but it will put your body at peace so that you can think clearly.

Third, practice cognitive therapy techniques.  (I studied this method to actually help me with another, unrelated chronic problem I have: tinnitus.)  We experience some stimulus A (e.g., a child’s seizure), and then we experience a response C (e.g., worry, panic, etc.).  The cognitive therapy method is to mindfully interject a new step B between A and C.  The new step B should acknowledge and validate A, but help us to arrive at a new C.  For example, our child has a seizure.  We recognize this and we interject by very actively telling ourselves “I’m really stressed about this seizure, I don’t like it, it makes me upset, BUT we will get past this and we will keep working and there will be better times ahead.”  The key to this is to keep using it, and after much practice, we start to re-train ourselves how to think and feel about something.  We eventually learn to associate A with a new and hopefully better C.  We can also use the same technique to reinforce a positive thought.  For example, event A could be something good and encouraging.  We can then interject step B that helps us to recognize and value the event, thus building a stronger connection between our ability to notice these good events and how they make us feel.

(And please let me note that the idea here is not to interrupt grieving, which is extremely important.  We all need to feel sad sometimes and we shouldn’t always be too quick to try to shake it off.  Sometimes we need grieving before healing.  The cognitive therapy method is instead to be applied to recurring thought patterns that we’d like to change.)

So in summary:

  1. Understand you are not alone in your feelings.
  2. Use mindful breathing to gain control of your body, to help your mind.
  3. Use cognitive therapy techniques: interject a step B between event A and feeling C to help train yourself for new thought patterns.


Low-Carb in Norway

Maintaining Nora’s low carb diet in Norway has gone fairly smoothly, aided in part by shipments of Mission low carb tortillas in care packages from friends and family back home. But we’ve also found some local products to integrate.

One such product is a compressed-seed cracker, very similar to “Flackers”. Nora has been using them for breakfast lately.

The total weight of the package is 230 g, and there are 10 crackers. Each cracker is 23 g. In Norway, the nutritional information is given per 100 g for all food (instead of per serving like in the US). Therefore, each cracker is 23/100 of the nutritional information listed on the back. Assuming 1 tbl of butter and 1 tbl of jam on the cracker:

1 Cracker: 2.8 g net carbs, 3.9 g protein, 6.7 g fat, 3.2 g fiber (ratio of 6.7 g /(2.8 g + 3.9 g) = 1.0)
1 tbl butter: 11 g fat
1 tbl jam: 10 g net carb

Total: 12.8 g net carbs, 3.9 g protein, 17.7 g fat, and 3.2 g fiber
Ratio: 17.7 g / (12.8 g + 3.9 g) = 1.1

Pretty reasonable ratio for Nora at this point. To crank up the ratio for a more full-keto approach, simply reduce the jam, or top the cracker with only cream cheese.

As a point of interest, I also ran this calculation with a heavy fiber seed bread that is available here. I was curious to see if any kind of bread — even a very high fat and fiber type — can work. Running the same calculation as above (one slice of bread with 1 tbl jam and 1 tbl butter) yields a ratio of 0.75. A bit low. This leads me to conclude that you should likely assume not to use any bread on the keto or MAD diets, as a matter of course.

Life in a Northern Town

2018 brings us to Trondheim, Norway! We’re here on a sabbatical for 6 months until July. For me, Christy, and Anders, this is a homecoming of sorts, as we lived here in 2004-2005.

Things are going well for our family. Nora continues to thrive and has integrated nicely into the local school. I’ve had some apprehension about living abroad with Nora: new foods, new routines, and away from our familiar foods and resources. And such a trip would have been unthinkable a few years ago. But we’ve adapted, and, so far, so good.

Disembarking the airplane with Nora in Trondheim, our new home for 6 months.

Trondheim in the evening light. It’s a beautiful city.

Snow! Still a novelty for Anders and Nora, as it rarely snows in Corvallis, and rarely enough for sledding.

First day of school. I was so impressed with Nora in her courage in starting school in a different country, away from her friends and her native language. The school was so kind about accommodating her.

We’ve also found the Norwegians to be very accommodating of Nora’s dietary restrictions. In general, they seem to very aware of gluten and peanut (and other allergy) concerns — we see it frequently on menus — so it’s been easy to extend that to Nora. We generally don’t explain the whole keto diet idea, but simply state that she must have reduced sugar.

At this point we’ve slightly liberalized Nora’s bread allowance, to the point where I feel comfortable with a limited amount of bread-heavy foods like pizza that come with a large dose of cheese or other fat/protein.

Nora prepares some hot chocolate: half cream, half whole milk, about a teaspoon or two of cocoa powder and a little bit of honey to taste.

Taking a break from skiing with a peanut butter and jam sandwich. We’ve found a great whole grain and seed bread at the local grocery storage with high fibre, high protein, and about equal amounts of net carbs and fat. With some peanut butter, butter and brown cheese, or with melted Jarlsberg cheese, it makes a good low-carb friendly snack.

Another day of skiing and a break at the ski cabin, which has a sitting/warming area and a cafe. We are enjoying waffles with jam and brown cheese. I can’t say this is terribly low-carb friendly. Well, let’s be honest, it’s not. But we try to load it up with as much fat and protein as we can. At this point for Nora I try to focus more on a healthy day-to-day routine, and trust that she has some ability to absorb the occasional sweet treat. Note, this is not acceptable when applying the diet strictly for seizure control. In that case, we feel strict consistency is extremely important; no cheating! However, with Nora now having almost 6 years of seizure freedom and several of those years off strict keto, hopefully we can trust she is solid.

Nora re-enacts a Say Yes to the Dress scene with Beanie-Boos.

Nora enjoys some fish soup way up north at the ice hotel in Alta, well north of the Arctic Circle. We took a trip up here to enjoy the arctic environment, visit friends, do some dogsledding, and stay in the Sorrisniva ice hotel.

Family portrait with the Northern Lights outside of the ice hotel in Alta, Norway. This was actually a pretty mild display. When Christy and I lived here in 2004, we were once treated to a phenomenal, otherworldly, indescribable display in Tromsø, Norway.

Some sort of winter Olympics-inspired event involving a duster. Nora has been happy and energetic.

She has adapted well to life here, as have we.  The plan for now is to continue with a processed-sugar-avoidance diet for Nora, and hopefully she will continue to thrive!

Keto Bacon Breakfast Muffins

Today we have a special guest recipe from Louise Hendon from The Keto Summit.

Prep Time: 15 mins

Cook Time: 20 mins

Yield: 12 muffins


  • 3 cups of almond flour
  • 1/2 cup of ghee, melted (or coconut oil)
  • 3 medium eggs, whisked
  • 10 slices of bacon, diced
  • 1 medium bell pepper, diced
  • 1/2 medium onion, diced
  • 1 teaspoon baking soda


  1. Preheat oven to 350 F (175 C).
  2. Cook the diced bacon, onions, and peppers in a pan. Let cool briefly.
  3. In a mixing bowl, add in the almond flour, melted ghee (don’t make it too hot), whisked eggs, cooked bacon/onion/peppers, and baking soda.
  4. Line a muffin pan with muffin liners. Spoon the mixture into the muffin pan to almost full.
  5. Bake for 20 minutes until a toothpick comes out clean when you insert it into a muffin.

Nutritional data per muffin:

  • Calories:  342
  • Fat:  33 g
  • Total Carbs:  6 g
  • Fiber:  3 g
  • Sugar:  1 g
  • Net Carbs:  3 g
  • Protein:  9 g

And then she was 9

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!