About Ted Brekken

Ted Brekken is an Associate Professor in electrical engineering (energy systems) at Oregon State University.

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.

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 (http://blogs.oregonstate.edu/oregonketokids/2015/08/16/caring-for-the-caretakers/) 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!


A Quiet Anniversary

April 24 2017 marked Nora’s 5 year seizure free anniversary.  We didn’t celebrate.  Just a little high-five and the knowledge that life goes on, more challenges lay ahead, and an appreciation for moments of simple happiness.

Nora’s period of seizures lasted only about 18 months total.  From a few tonic-clonics in the fall of 2010 to a horrendous period of myoclonics in the fall of 2011 to eventually getting her seizure free in the spring of 2012.  I estimate she had something like 10 tonic clonic seizures, but she had at least 1,000 myoclonics, and probably several thousand more that we didn’t document.

On one hand 18 months doesn’t sound long, but anyone that lives with epilepsy knows it brings life to a crawl.  You are always on guard, always waiting for the next seizure to come out of the blue sky.  The fall of 2011 felt like a lifetime to me.

Nora doesn’t really remember any of it.  She asks what the seizures were like.  She knows that her diet and a period of seizures are part of her identity, but she does not remember.

I can see now that we have been unlucky and lucky.  Nora was unlucky to have to deal with seizures.  She was unlucky to have epilepsy.  Unlucky to have a nasty epilepsy.  Unlucky to have a refractory epilepsy.

But we were lucky that the ketogenic diet worked so well.  We were lucky to pull her back from the edge.  We were lucky to have the dedication and resources to apply the diet strictly and completely.

My heart breaks for people still looking for answers; still looking for their good luck after the bad luck.  Please hang in there.  Please keep going.  Things will get better.

Nora is doing well.  She is a very normal kid.  She attends a dual language school (English/Spanish).  She likes math when phrased as silly word problems I challenge her with when we hang clothes together, but can get frustrated with the notation and worksheets at school.  She has many good friends.  She loves to dance and perform.  She has very good pitch when singing, even though she hasn’t had any voice training.  She plays piano, reluctantly.  She listens to countless audio books.  She has grown tall and lean and — surprising to us — recently shown running aptitude: she has a runner’s gait.

Her diet is still restricted, but only a little.  Our only remaining rules are that she not have any refined sugar (no soda, no candy), limited bread, and that any fruit be balanced with a roughly equal amount of cheese or nuts (by volume).

We’ve actually gone out for gelato a few times this summer.  When I first had the idea for it a few weeks ago, I checked with Christy to see if she felt comfortable with it.  When we agreed, I suggested it to both kids.  Nora was ambivalent, and responded with “but we’re out of my ice cream,” referring to the coconut ice cream she was anticipating that we would bring with for her to have while everyone else had gelato.  I told her “no, you get gelato too.”  Those little moments are nice.  She licked her bowl clean.

She’s waited patiently for five years.

(A few days later one evening she suggested with as much casual indifference she could manage “Maybe we can go downtown and have dinner and then have gelato.  If you want.”)

I will always be grateful for how Nora has embraced the diet’s role in her health.  She is so responsible and so thoughtful about it.  To our credit I think we have always been very open with Nora about the benefits and challenges of the diet, so that we can sympathize with her when she is frustrated, and celebrate with her when she gets to exchange Halloween candy for toys.

Practically speaking, Nora still has the same breakfasts and lunches as she has for years.  Breakfast is our special granola (Nora’s MAD About Granola) with half and half.  Lunch is Mission low-carb tortilla roll-ups with turkey and cream cheese, some nuts or cheese, and some fruit.  Dinner is very often Mission tortilla quesadillas with cheddar cheese and avocado and carrots.  Her main treat is Coconut Bliss chocolate bars and Coconut Secret coconut bars.

For now, I am thankful for these routines, and this quiet anniversary.

(P.S. As I write this, Nora and Anders are on the trampoline.  It’s 9:00 PM on a dusky warm spring night.  Anders is explaining to Nora how evolution works, and using Nora’s epilepsy as an example of mutations.)


The coming autumn…

The end of summer is upon us; Nora and her brother will be starting school this week, with Nora entering the third grade.

It’s been a good summer.  Nora has been healthy and happy, enjoying countless hours listening to audiobooks and setting up playdates with friends.  Last April we quietly celebrated four years of seizure freedom, and about two years on a reduced version of the ketogenic diet.  For the last year and a half or so we’ve been estimating Nora’s portions, focusing more on limiting carbs and matching carbs with fat and protein in proportions roughly equal by volume.  For example, if Nora wants some fruit, we ask her to eat an approximately equal amount of cheese or nuts (she usually prefers cheese.)  Ideally we’d be at something like a 1:1 ratio, which would be close to a MAD diet, but I think many days it is probably less than that and something more like a low glycemic-index diet.

We’ve felt more comfortable traveling.  We took the train back to North Dakota — a nearly 30 hour ride — to visit family this summer and had no trouble feeding Nora with a combination of carefully selected retail food or foods we brought with us.


For a fun treat we’ve recently found the “Coconut Bliss” brand of ice cream, which is around a 1:1 ratio.  Nora loves it, and I admit I feel a great delight in allowing her to enjoy an off the shelf ice cream product without much restriction.  It has 17g of net carbs per serving, which would have been much too high to fuss with back when Nora was restricted to 10 g of carbs per day, but now I feel comfortable with her having it due to the 19 g of fat that goes with it.  (As an added bonus, it’s made nearby by a Eugene, OR company.)

Nora has grown tall and strong, with absolutely no signs of any growth delay she may have had while on the carb and protein restrictions.  As I type this, she is swinging and climbing in a small tree in our backyard, like the primate she is.

IMG_5215Cognitively Nora is sharp and very strong with language; she has a very large vocabulary and greatly enjoys mystery books and theater.  She speaks well and reads well.  She’s a natural organizer.

She does struggle with certain abstract concepts, such as music notation, analog clock reading, and mathematical procedures.  Of course these are not unusual struggles for any kid, but I would say Nora seems to struggle just a little more than average — whatever that may be — with these sort of abstractions.  I wonder sometimes if these minor struggles are related in any way to any cognitive delay that would have been related to the epilepsy, as myoclonic epilepsies are usually correlated with cognitive delays or regressions.  But I feel there’s really not much evidence of that; it’s quite likely that Nora is just a very normal kid with some strengths and some areas to improve.  Watching her develop I’ve never lost the gratitude that she is doing so well.  I will never take her health for granted.

It was about one year ago I wrote a post about Caring for the Caretakers.  Nora’s epilepsy really took off in the fall of 2011, so I think I associate the fall with those difficult times.  This fall I find myself thinking of it again, about our journey and also about those that are still struggling or will soon be sent tumbling down that path.  So again we want to remind our fellow parents and families that you are not alone.  Epilepsy can be so difficult, and scary, and unfair.  It is OK to acknowledge how hard it is, how scary, how unsettling, how frustrating, how limiting.  When we are hurting, we must take some time to acknowledge our pain, and also to have our community and supporters acknowledge the pain.

To all the parents and caretakers and families out there, I say: I am so sorry this has happened.  I am so sorry this unfair and scary thing has set upon someone you love.  I am sorry it hurts.  Cry and rage if you need to; give yourself space to acknowledge the hurt.

When you’ve had time to be with your pain, pick yourself up and put one foot in front of the other.  Keep going.  Each difficult day you make it through is one less you’ll have to deal with.  If you are in the midst of a miserable time, remember that it will not last forever, there is a better day out there in your future, for you and your child.

We are here to help.  Please leave a comment if you need an encouraging word, or a space to vent.  No one is alone in this.

Caring for the Caretakers

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.


Peanut Butter Cups for Supplements

Even though Nora has successfully weaned down to the less restrictive Modified Atkins Diet, she still takes a daily vitamin and calcium supplement: 1/4 of an adult Centrum and 500 mg of calcium citrate daily.

For the last six months or so, I’ve been using a simplified, modified version of Christy’s B^3 recipe.

  • 2 adult Centrum
  • 16 capsules of Solaray calcium citrate (each capsule is 250 mg)
  • 40 g of butter
  • 80 g of Adam’s peanut butter

I grind the multivitamin with a mortar and pestle, break open the calcium citrate capsules, and mix it all in with the butter and peanut butter mixture.  I warm it slightly then pour it into 8 small silicone cups and put them in the fridge to solidify.  Each cup then has approximately 1/4 of a multivitamin and 500 mg of calcium citrate, along with 10 g of peanut butter and 5 g of butter.  The vitamin is bitter and the calcium citrate is chalky, but the peanut butter seems to do a good job of masking it.

Per cup:

  • 1.25 g carb
  • 2.19 g protein
  • 9.29 g fat
  • 0.63 g fiber
  • 2.70 ratio