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

    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’ve wanted for a long time to write this post.  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


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.


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.

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.

Back to Modified Atkins Diet

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

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

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

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

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

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

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

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

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

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

IMG_5239For Christmas brunch I made the basic waffle recipe from The Joy of Gluten Free, Sugar Free Baking with minor modifications. I was able to use whole milk and the whole family ate it. No more 2-recipe mornings for pancakes or waffles for us!


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

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

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

Cook as pancakes or in a waffle iron as usual.

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

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

Help, Thanks, Wow

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

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

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

IMG_2288Now, we enter “WOW.” Almost 3 years on diet therapy, 2 years and 7 months seizure free, and Nora is weaned back to the 1:1 ratio of the Modified Atkins Diet. We have come full circle and are re-learning MAD again. When we do the ketostix urine test at home, she still has some ketones but it is very weak now.

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

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

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

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

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

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


Foods by Ratio

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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