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.

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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.

Chocolate Poundcake and Nora is 8!

IMG_4422Nora 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

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.

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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

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.

Taking Keto Kids Camping

We just got back from our annual camping trip with friends. We had a lot of fun swimming in the lake, playing with frogs, and watching the annual Perseids meteor shower. Our family has always loved going camping. Both of my kids always slept better as babies in the great outdoors then they did at home. Two years ago, when Jaron started on the diet, we had to make a decision to continue camping or wait until (hopefully) he would come off the diet. The diet is time consuming and you need just the right ingredients to make it work, so taking it to the great outdoors seemed like a daunting task. Jaron loves to camp so we decided it give it a try.

It turned out that most of the hard work was done before and things went very smoothly once we were in the great outdoors. Here are the steps we take when going camping.

  1. Choose a campsite that fits the needs of your keto-kid: If your kid is still having seizures, pick a campground that is flat and doesn’t have a lot of uneven ground so if he falls there aren’t a lot of obstacles for him to hit. You also want to consider what kind of amenities your campground has. You can go rustic with just a water pump or a place with showers. We have camped at both and I must say it is easier to have a place with running water for washing keto dishes. If you have a camper (we tent camp) this may not be an issue.
  2. Choose your menu: We choose meals that can be put on a plate with minimal to no weighing involved. Meals we have taken camping are:
  • -Muffins (Christy has several good ones to choose from on this website)

    Jaron enjoying macadamia  nut and cheddar cracker with ranch dipping sauce and apples.

    Jaron enjoying macadamia nut and cheddar cracker with ranch dipping sauce and apples.

  • -Macadamia nut and cheese crackers (found in The Keto Cookbook by Dawn Marie Martenz)
  • -Pizza (also found in The Keto Cookbook)
  • -Hot dogs, fruit, macadamia nuts, and ranch/mayo dipping sauce
  1. Prep your food before you leave: If you have a camper you may not need to do this because you have a sink and counter space to make the meals.  We tent camp and pulling out all ingredients and utensils to make a meal on an uneven picnic table (if there is even a picnic table) and then having to wash all the dishes seems exhausting and a waste of a good camping trip. So I choose to make my meals ahead of time. I spend a long 4-6 hours before we go camping putting together all the
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    Here is a small sample of what I made. I put all his food in containers and then in ziplock bags so water from melting ice doesn’t leak into the food causing it to get soggy.

    meals. That’s enough meals to last us 4-5 days. The prep time done before we leave makes feeding a keto kid in the woods stress free. When it is time to eat we just pull out a pre-made meal and lay it on a plate.  The only weighing we do while camping is the heavy whipping cream Jaron needs at breakfast and before bed to take his supplements.

    1. Experience Tip 1: Make the entire meal in one plastic container. Use silicone cups to separate the wet ingredients. Then make sure you lay them flat in your cooler so they don’t spill onto the dry food.
    2. Tip 2: We put our plastic containers in zip lock bags so they were extra protected from the melting ice water that could leak in and ruin a meal. This happened once. It made an unhappy keto kid.
    3. Tip 3: Make an extra day’s worth of food so you can focus on cleaning up the camping gear and getting back into the swing of things before having to keto cook again.

If you are considering taking your kid camping, I hope this post helps you make that dream possible.

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 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

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Hospital Initiation

Hello everyone!! My name is Amanda Swick. In an earlier post, Christy introduced you to our family but I thought I would share a little more about us. I am a stay at home to two beautiful boys.  Josiah is 7 and Jaron is 5. Jason is a Christian minister who works with college students at Oregon State University. Jaron was diagnosed with Doose Syndrome in 2013 and was put on the ketogenic diet. He is currently 17 months seizure free. You can read Jaron’s full story here. Our family enjoys hiking, camping, riding bikes, going to the beach, playing board games and going to the library. Jason and I are excited to be able to encourage and help others on the ketogenic diet journey. Ted and Christy were a big help for us when we first got started and our hope is we can return the favor to others.

As I was thinking about what our first post would be, I decided I would just start at the beginning, with Jaron’s initiation on the diet. Nora was eased onto the diet from home, but Jaron went through a hospital initiation. If you are considering a hospital initiation, here is snapshot of what one is like.

We arrived at the hospital Sunday with Jaron having drop seizures every 3-5 minutes. We spent the rest of the day get labs done and getting settled into a safe environment for Jaron. Monday morning was an EEG and the neurologist diagnosing Jaron with Doose Syndrome.  I immediately asked about putting Jaron on the Ketogenic Diet. He was already on two antiepileptic drugs and they weren’t working, so the odds of another drug working were very low.  The diet had a greater chance of helping Jaron than another drug. The doctor agreed this was a good choice for Jaron and would have the dietician come in later that day to get us started.

The dietician and I first talked about whether the ketogenic diet was a good fit for our family. She described what was needed to make the diet work: lots of hours and loads of tears from all of us.  She didn’t do this to deter us, but to be realistic about what it would take to make it work.  She wanted me to commit to at least 6 months on the diet before I could give up. At that point, I was willing to commit to anything because Jaron was falling and hurting himself so much.

Next, we talked about what ratio to start Jaron at. We decided a high ratio of 3:1 was a good place to start since we wanted to get some seizure control quickly. Starting at a high ratio was only possible as a hospital initiation. At a 3:1, Jaron needed to be monitored closely for the first couple of days to make sure his body (possible kidney and liver distress) could handle the diet.

Finally, we had to decide what foods the hospital had that Jaron would eat for his first keto meal. I was under the impression from my research that Jaron would have to fast for 2 days before starting the diet. Since they discovered that easing into the diet is just as effective as starting the diet as a fast, they no longer required a fast. Instead they would start his first meal at ½ of his target calorie range and increase his calories over 24 hours.

We decided Jaron’s first meal would consist of turkey, lettuce, red peppers, mayo, and cream. Jaron loved the turkey, lettuce and red peppers. He tolerated me putting mayo on his lettuce, but it wasn’t his favorite. He HATED the cream. Jaron liked milk but he didn’t like cream. It took a lot of coercing to get him to drink it all. That was hard, but the worst part was getting him to take his medicine (he was on Keppra and Depakote at the time). The hospital’s way of giving him adult medicine that he can’t swallow was to crush it up, mix it with water, and feed it to him with a syringe.  Yuck!! Through a lot of encouraging and bribing we would get it all into him. He was such a trooper.

After 24 hours on the diet, Jaron began to go into ketosis. They wanted to monitor him for another day to make sure his body was handling the change in diet well. During that day, we had to make sure he was drinking enough water and counted seizures for any change.

Even though his body was handling the diet well, there was no initial change in seizure count after a few days so they upped the Depakote, which would help for a few weeks, and sent us home. It would be a few weeks before we started seeing the seizure count go down due to the diet.  It would be three months and an increase to 4:1 before we started seeing seizure free days.

Looking back at our experience with hospital initiation, there were things that I liked about the experience and things I didn’t. I liked the hospital initiation because I had daily contact with the dietitian. We sat down for an hour the first day and she showed me how to use the Ketocalculator. As I began making Jaron his meals at the hospital I had her there through the whole process. As I made meals on the Ketocalculator I could ask questions and gain confidence.

Also, being in the hospital forced me to only focus on figuring out how to administer the diet without the distractions of everyday life. This made the transition to the diet at home much easier. While we had issues with Jaron taking his medicine and eating all the food in the hospital, I was prepared to head home with ideas on how to address some of the obstacles we faced while in the hospital.

The tough things about the hospital initiation all revolved around the uncomfortableness of being in a hospital. Our food choices were limited which made it hard to find meals that were appetizing. We didn’t sleep well because we weren’t in our own beds. And there is the cost of staying in a hospital.

From Jaron’s perspective, the process wasn’t bad. We were at a children’s hospital so there was always something fun to do. People came in and sang songs with him. He could go to the play room and play with the toys. He never begged to go home and he seemed content most of the time. The only thing he didn’t like was the morning blood draws and the nasty medicine.

Overall I am glad we did a hospital initiation as it helped to arrive home prepared, confident and mostly ready for the days to come.

Refresh & Welcome the Swicks

This week we are refreshing our blog! After almost 5 years of living with the reality of epilepsy, treatment and recovery, we are taking stock and updating our blog to reflect where we have been and where we are going.

Keto Parent Meeting. Photo credit: Amanda Cowen, Corvallis Gazette Times

Keto Parent Meeting. Photo credit: Amanda Cowen, Corvallis Gazette Times

You will notice the new look at the new name: Oregon Keto Kids. Now that Nora is almost 3 years seizure free and we are weaning her from the diet, we are turning our attention toward supporting other families as they use the ketogenic diet to overcome epilepsy. Of course, this blog is always for everyone, no matter where you live, but it is also a central part of the more hands-on support group we will form for parents who are starting the diet at OHSU Doernbecher Pediatric Neurology’s Ketogenic Diet Program. The first step is working with other families who are emerging from their journey with the ketogenic diet armed with the experience to reach out to support others.

Thus, we welcome Amanda and Jason Swick as co-bloggers at this space. Their son, Jaron, was diagnosed with Doose Syndrome when Nora was about 1 year seizure-free. They connected with us after Nora’s story was in our local newspaper. We are all grateful that our story was told and that another little person and family could use the ketogenic diet to overcome epilepsy. The Swicks are an amazing family and they are also ready to reach out and support others.

During the next few weeks I will be updating many of our main pages. I haven’t looked back at them in ages, and see how out of date they are!  It’s time to re-write Nora’s story and call on our experience to re-write the other general informational pages.

It’s an interesting experience to look back at those times, remember what we were feeling and experiencing, and to see the journey to now. We are thankful that it went as well as it did. Ted and I feel that we don’t have a lot more to say on a regular basis and are not making as many recipes anymore, so maybe we will spend some time curating the blog for the “best of” and doing some summary posts of the challenges that we faced.

Amanda will be blogging about Jaron’s experience (you can read Jaron’s Epilepsy Story now, and look for updates in the future). She also has experience with Doose Syndrome, the Keto Calculator, reflux, kidney stones, camping and more, so you will learn a lot from her experience and perspective.

Our blog-refresh plans are not done yet, so we will keep you posted as we make changes so that you can stay in touch. We are always happy and grateful to hear from other parents and supporters.

And we are looking for support! If you want to help get the support group off the ground, we will be looking for volunteers to help us get donations to buy basic supplies for families, print a welcome packet, buy books about living with food restrictions for kids, etc. We would also like to contact some of the companies that make good keto foods to get coupons or other discounts (for coconut oil, macadamia nuts, nut flours, cream, etc.) Please contact us if you want to pitch in; donations will go through the Doernbecher Foundation and will be tax deductible!

March 2015 Keto Clinic Appointment

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.

IMG_5329Her 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!

IMG_5310We 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.

IMG_4668We 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.

IMG_4665

MADSheet – A Spreadsheet Tool for Modified Atkins Diet Administration

We came into the ketogenic diet in a non-standard way for Nora.  We started with a low glycemic index diet for a few weeks in the fall of 2011, then to a modified Atkins diet for a few weeks, then to a 3:1 ratio ketogenic diet for a few months, and finally to a 3.5:1 ratio ketogenic diet from April of 2012 to April of 2014.  Each increase provided better seizure control.

Because we transitioned slowly into the ketogenic diet instead of the traditional 24 hour hospital induction, we had time to develop many of our own tools for tracking Nora’s diet and seizures.  When we went full keto, we continued to use these self-developed tools — mainly a Google Docs spreadsheet — with the approval of our neurologist and dietician team.  (Although we administered the diet differently, we greatly support the Charlie Foundation’s Keto Calculator, and recommend that tool for administering the ketogenic diet.)

Starting April 2014, after two years of seizure freedom, we slowly weaned Nora by decreasing the ketogenic diet ratio by 0.25 every 3-4 weeks.  In December of 2014 we finally weaned down to a 1:1 ratio.  We then transitioned to a modified Atkins diet in which only carbs are tracked (as opposed to the full suite of carbs, protein, fat, and fiber).  This greatly simplifies administration of the diet, but we still use a simplified version of our spreadsheet.

We get a lot of questions about our methods for administering the diet, and because the modified Atkins diet can be done with less strict medical oversight, we are now posting a version of this spreadsheet in case anyone finds it useful for administering the modified Atkins diet.  (For the ketogenic diet, we recommend using the Charlie Foundation’s Keto Calculator as that is a widely supported and vetted tool.)

We recommend using a tool like this if you aren’t sure you are estimating portions right, and want to learn the proper proportions of foods using a gram scale (a traditional kitchen gram scale will be fine, no need to measure to the tenth of a gram as in the ketogenic diet). We have also found it useful in weaning off the ketogenic diet, after you have been accustomed to weighing all food and want to learn how to think in portion sizes again and only count the carbs, not the ratio.

Note that the modified Atkins diet is still a high-protein, high-fat diet. You are still going for a 1:1 ratio. This spreadsheet only helps you count carbs and is not intended to help you plan full meals at a 1:1 ratio. Notice that cheese and meats are not listed (unless it is a product with significant carbs). Add protein and fats to every meal, and use the higher fat foods in the spreadsheet (labeled in green) to supply healthy fats.

WARNING
The modified Atkins diet is less demanding on the patient than the ketogenic diet, but it is still a restricted diet with potential side effects.  We strongly recommend you inform your medical care team if you are going to use the MAD diet for your child.  Low carb diets can interact with other medications, and some medical conditions are contraindicated with low carb diets and could be very dangerous.  Check with your medical team.  If your child is struggling, sick, or is continually not feeling well, stop the the diet and check with your medical team.

You can download the MADSheet (version 1) here: MADSheet-v1.

Instructions are given in the “INSTRUCTIONS” tab in the spreadsheet.  Foods with no (or very little) carbs (such as butter) are not listed in the spreadsheet as they don’t need to be calculated and weighed.  But they will still be part of most meals.  As an example, for a morning snack for Nora I would like 3 grams of carbs of apple and 1 gram of carb of 85% dark chocolate and 3 grams of carbs of peanut butter.  Using the MADSheet, I put 3, 1, and 3  respectively in cells J24, J27, and J29.  It is then calculated that I need 24 grams of apple, 3.6 grams of chocolate, and 24 grams of peanut butter.  If I were doing this for Nora I would then put an additional dollop of butter in with the peanut butter to push the ratio up a bit, but I don’t need to measure that as it doesn’t have any carbs.  (In the full keto version of the diet though, I do need to calculate and weigh the correct amount of butter along with everything else.)

Lastly, the MADSheet tool is not intended as an optimized, finished product in any way.  We do not guarantee the spreadsheet to be free of errors or bugs.  We are providing it as a template or starting point to be modified as necessary to fit the needs of the user.  Please delete foods, add foods, change and modify cells and calculations as you see fit.  Please take care to double check all calculations and formulas, especially after making modifications.  This is not intended as medical advice.  Please check all methods with your medical team.  Use at your own risk.