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.

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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.

Fall Keto Clinic Visit

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Throw Back Thursday, 2.5:1

Tonight I was emailing a parent who had contacted us for help with getting started with the Modified Atkins Diet (MAD). I shared the links to the information that Doernbecher gave us when we started (http://www.atkinsforseizures.com/). They basically told us to go to it, and away we went. MAD is a very DIY diet treatment, at least when we started.

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The parent’s specific question was how we documented Nora’s diet when we got started, so I took a picture of one day from the first food log that we kept, dated 12/15/11.

Excuse the handwriting and the food stains. We stood at the kitchen counter and wrote down everything Nora ate, along with the grams of carbs, protein and fat (each column of numbers). Then added up down the column to see total carbs, protein and fat and to calculate the ratio (fat/(carbs+protein)).

We got those numbers from a nutrition database and nutrition fact panels, and had a little “cheat sheet” for commonly used foods that we kept on the fridge. After a few weeks, I knew a lot of them off the top of my head.

In those days of MAD we were estimating and using common measurements, like 1/2 T of cream or 1/4 avocado, rather than weighing everything in grams. Everything was much less precise. Although we could see a difference in her seizures at the time, we didn’t yet have complete control.

Little notes found their way onto the page too: three small myoclonics and one medium myoclonic in the morning, along with feeling tired and hungry. Ketone readings at different points during the day.

On the back side of this page, I noticed that the final ratio for the day was 2.5:1. Just where we are now. And ready to step down to 2.25:1 tomorrow, still seizure free. What a difference 2.5 years made.

Nora’s MAD About Granola!

Last week we took Nora’s ratio down to 2.5:1 and she is still doing great! We are getting ready to go back to North Dakota and Minnesota to visit friends and family for the first time since starting the diet, so we stepped her down a little earlier than scheduled so that we could get a good 10 days of 2.5:1 under our belt before traveling.

Traveling, especially air travel, feels like a big hurdle. We’ve been analyzing our list of regular foods to figure out what we need to pack, what we can shop for on arrival, and how to keep it simple yet appealing for Nora. Interestingly, we have noticed that bringing up her carbs has made us rely on heavy cream even more even though she is getting slightly less total fat. There are very few whole foods that have both carbs and significant fat (pretty much just kalamata olives). So for every extra serving of carbs, she still needs 2.5 g of fat on the side. We didn’t realize it at the time, but changing the ratio was easier when we were adding protein because protein foods (think cheese) usually have fat in them. Even small adjustments have changed the meal planning landscape.

Now, on to granola:

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In these years of keto cooking I’ve come across a few paleo-granola recipes and always thought I should make some for Nora. However, I always hesitated because I couldn’t imagine putting in any honey or dried fruits when she was more carb-restricted, so any recipe that worked for her would have amounted to a pile of crunchy nuts. Maybe not worth the effort when she eats plenty of raw nuts already.

IMG_4894Now that she gets 25 grams of carbs per day (remember when it was 10 g of carbs per day…for almost 2 years?), I threw one of the paleo-granola recipes into my recipe analyzer website and saw my opportunity. Nora is now eating dried currants and honey! It’s just a bit, but they are in there. And this granola is so very delicious, with just a hint of sweetness, that it is much more than a pile of crunchy nuts. It is at 2.1:1 ratio, so just a bit of extra fat brings her to 2.5:1. It will be highly packable and a very “normal” breakfast on our trip. Nora also loves it! She asked for granola instead of popcorn when she watched a movie with friends recently and keeps suggesting it as a snack option. As she says, it’s like cereal, only better!

I would recommend this recipe for anyone doing MAD, low-carb, gluten-free, paleo (is this recipe paleo? I can’t keep track, decide or modify for yourself). I’ve been eating it for breakfast with my kefir too. I went back to the commercial granola this morning for comparison and preferred the homemade granola because it was more flavorful and crunchy, and not as sweet. Nora has had it for breakfast daily with full-fat plain Greek yogurt, heavy cream, and a few fresh blueberries, formulated for a 2.5:1 ratio.

If you or your child are on a high-ratio strict ketogenic diet, this batch-process might not be appropriate for you. You may still be able to make granola, but you will want to divide the ingredients down into individual servings so that you know exactly how much carb, protein and fat is served at one time. When I take 20 g of granola out of the batch, I don’t know if Nora is getting 3 or 7 currants in her breakfast. I only eyeball it to make sure I’m getting a spoonful of granola with a reasonable mix of nuts and currants. At this point I’m confident that the difference won’t matter for her, but back when we were striving for seizure control and counting the days and months of seizure-freedom I would not have taken chances with it. Alternatively, I think you could leave out the currants and be more confident that any serving taken from the batch is approximately equivalent in carbs because the honey is equally distributed.

Actually, you can completely revamp this recipe any way you like, as long as you keep the general proportions the same. This is my 2nd version of granola. The first time I used dried cranberries instead of currants and slivered almonds instead of pecans. I also included sunflower seeds in that batch, and less coconut. The first time, I basically pulled all of the nuts and dried fruits out of my cupboard and used what I had on hand. In this version, I bought the ingredients that I needed to make it lower carb and higher fat.

I know that most people won’t have brown rice protein powder in the cupboard, and it is not essential to the recipe. It’s been hanging out in our cupboard since Nora’s MAD days, when I was trying to cram more protein into everything I made for her. Now I want to use it up! Go ahead and experiment with what you like, but remember that if you are keeping close track of nutritional information you will have to analyze your recipe accordingly. The nutritional facts given here are specific to these ingredients and to be used as a reference only. Nutritional facts for the whole batch are given, and please see the note on nutritional information at the end of the post for more details.

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Nutritional information in one whole batch of MAD About Granola. See below for individual serving nutritional information. Analysis by http://caloriecount.about.com

MAD About Granola
200 g (1-2/3 cup) walnuts
200 g (1-2/3 cup) pecans
100 g (3/4 cup) macadamia nuts
50 g (2/3 cup) zante currants
50 g (1/2 cup) Bob’s Red Mill golden flaxseed
30 g (1/3 cup) unsweetened shredded coconut
10 g (1 Tbsp) brown rice protein powder
30 g (1 large) egg white, lightly beaten
30 g (2 Tbsp) water
40 g (3 Tbsp) coconut oil
40 g (2 Tbsp) honey
5 g (1 tsp) vanilla extract
1 g (1/2 tsp) ground cinnamon
1 g (1/4 tsp) salt

Preheat the oven to 200 degrees F and line a baking sheet or roasting pan with parchment paper or a silicone baking mat.

f1829440Measure the whole nuts and currants and pulse in a blender or food processor to chop the nuts, but don’t grind them into a fine meal. Pour into a large mixing bowl. You will get some nut dust, which is ok. If there are any nuts that are nearly whole, pull them out and chop down to smaller pieces. Everything should be coarsely chopped. Next, measure the flaxseed, coconut and protein powder (if using) and add to the chopped nuts. Combine well.

In another mixing bowl, whisk together the egg white with the water until bubbly and slightly foamy.

In a microwave-safe bowl, melt the coconut oil. Measure and whisk in the honey, vanilla extract, cinnamon and salt. The cinnamon makes it look dark, as in the photo. Add this to the egg/water mixture and whisk well. Use a rubber spatula to be scrape all of the mixture out of the bowl.

Combine the wet and dry ingredients, stirring everything well to make sure it is all coated. The mixture should be evenly moist but not pooling liquid on the bottom of the bowl. The liquid will pick up all of the small loose bits and bind them together, which is just what we are looking for.

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Spread the granola mixture evenly on the parchment or silicone mat-lined baking sheet or roasting pan and bake for at least 60 minutes, stirring after 20 minutes, and again after 40 minutes. After the last stir I pressed the mixture firmly into the pan so that chunks could bake together. Turn off the heat and let the granola sit inside the oven until cool. I waited several hours. I made it in the morning and did the hour of low baking, then took it out of the oven in the evening after dinner. The granola will continue to dry and form clusters in that time.

Use a spatula to gently break the granola into clusters. Some loose bits will also break off. It’s all good. Transfer everything to a 2-quart sealable glass jar, or any airtight container to keep it fresh.

Nutritional information note: Notice from the nutritional information that the raw measured ingredients add up to 787 grams before cooking. After cooking, the whole batch weighed 710 grams. Typically baked goods lose about 10% of their weight by volume when the moisture cooks out of the food, which is true here as well. That means that you get more carbs, protein and fat per gram of cooked food because only the water weight disappears. When you calculate the nutrition per cooked serving in a batch like this, you have to divide by the cooked weight to get accurate nutritional data.

For every 1 g of cooked granola in this recipe, there are:
Carbs: 0.13 g
Protein: 0.15 g
Fat: 0.58 g
Fiber: 0.09 g

Add that up, and you get 0.97 g of macronutrients in 1 g of granola. We can infer that there is 0.03 g of water left too. Math and science at work!

In a 20 g serving typical for Nora, a scant 1/4 cup, this recipe has:
Carbs: 2.64 g
Protein: 2.91 g
Fat: 11.66 g
Fiber: 1.86 g
127 calories
2.1:1 ratio

Enjoy! Inspiration for this recipe from: http://www.theroastedroot.net/paleo-granola/ and http://againstallgrain.com/2012/01/29/grain-free-scd-paleo-vanilla-granola/. But just google paleo granola and you will find many more! Try it and you will never go back to commercial granola or cereal!

Continuing to wean and a berry tart for spring

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Nora’s birthday pool party, with keto cheesecake and strawberries, post-sunscreen and goggles!

We moved Nora’s ratio down to 2.75:1 about 10 days ago and she continues to thrive. So much has been going on that we have not had time to write a thing–dance recital, kindergarten graduation, Father’s Day, summer vacation, and Nora’s birthday! She turned 6 last Sunday and enjoyed a pool party with her friends. She requested Keto-Perfect Cheesecake as her birthday treat, with lots of strawberries on top! Half of the cake was lunch, the other half was afternoon snack and part of dinner. What a great day!

This feels like a significant step down in ratio because Nora’s myoclonic seizures didn’t stop until we were using a 3:1 ratio in a consistent way throughout her day. We are now below what felt like our “safe” point. Ted has checked ketone levels with the urine dip sticks and found that she isn’t in the highest ketosis level all of the time anymore, although still quite strong. From here on out we increase her carbs and decrease her fat because she is now getting the daily protein requirements for a kid her age. When we stepped it down to 2.75:1, she went from 17 g of carbs per day to 21 g of carbs per day. That’s a pretty big jump, 4 extra grams of carbs is a treat (see 1 gram of carb of various foods here). Hooray for fresh berry season! We are getting at least 1/2 pint of raspberries from our own bushes every day and getting to the farmers’ market weekly to make the most of her new carb allotment. I’m starting to think about trying the higher-carb fruits and veggies that have been off-limits.

Look at all of those berries!

Look at all of those berries!

With all of the milestones, particularly moving down the ratio and her birthday, both Ted and I have been feeling more anxious. We don’t take for granted that Nora is so big, healthy and smart today, which sometimes makes the wean seem all the more perilous. The better things are with Nora, the more we have to lose if epilepsy lashes out at her again. Of course, we still have every reason to believe that she will wean off the diet and do fine, but some of these moments have us holding our breath, hoping that it is all behind us. We went camping last weekend. Nora could not remember going camping before, it has been so long since we went as a whole family. She loved every minute of it and we had watermelon with our dinner, including some for Nora. We are going back to visit family and friends in the Midwest this summer, which we have not done since starting the diet. We hope that this is the new normal.

I’ve done some extra baking to let her enjoy the new ratio, mostly using almond meal more than I have before. I tried this berry tart crust recipe, slightly modified from the Almond-Pecan Piecrust recipe in The Joy of Gluten Free, Sugar Free Baking and it turned out great. Sturdy enough to remove the tart mold and look like something from the French bakery while being simple and delicious. It’s a keeper.

Nutritional information for one Tart/Pie Crust, with berries. Nutritional analysis by http://caloriecount.about.com/

Nutritional information for one Tart/Pie Crust, with berries. Nutritional analysis by http://caloriecount.about.com/

Tart or Pie Crust
(1 serving, 2.5:1 ratio)
13 g almond meal/flour
3 g ground pecans, or hazelnut meal/flour
3 g coconut flour, Bob’s Red Mill
6 g butter, melted
0.3 g baking powder
1 g vanilla extract
dash of salt
4 to 5 g water as needed (see below)

Preheat oven to 325°F. Weigh and mix together nut flours, baking powder and salt. You can use a sprinkle of no-carb sweetener such as stevia if desired.

Melt butter and mix in vanilla extract. Stir into dry ingredients and add water just until the mixture is stiff, like the consistency of playdough.

Put the dough into a single-serving tart or pie pan, spread it with your fingertips until it is evenly distributed. You could also shape it into a flat circle on parchment paper or a silicone baking sheet. Prick the bottom and sides a few times with a fork to prevent air pockets. Cover the edges with aluminum foil (or not) and bake for 10 minutes if using a cream-like or custard filling. I haven’t tried it, but I bet the blueberry panna cotta recipe would be wonderful if added to a baked tart crust. I’ve got a mind to try the vanilla cream pie filling recipe from the cookbook as well, with appropriate modifications.

IMG_4779To make it a berry tart, calculate the amount of berries and coconut oil or butter you want to use as a topping. For example, for a 3:1 ratio, you could add 10 g blueberries, 20 g raspberries, and dot with 5 g coconut oil (pictured). Bake for about 20 minutes or until berries are bubbly and crust is browned. Then serve 14 g cream on the side, as whipped cream, with tea, or as “keto milk” thinned with water and with a drop of vanilla flavoring.

I’ve used this basic recipe for berry tart and cheesecake for family and friends after trying it for Nora. Using a full-sized recipe and pie pan, I made the chocolate crust version adding cocoa powder and sugar (of course, for Nora I would use stevia instead of sugar–the chocolate requires some sweetener or it would be too bitter). The crust got rave reviews from a group of grad students! I personally like the flavor better if I skip the coconut flour, but it holds together better if it is included. This recipe is versatile enough to be modified for your needs. If you want to make a firm-sided tart, make sure to use the coconut flour version and a little more water. If you don’t mind it a little more crumbly, use all pecan or hazelnut and slightly less water. It’s all good.

Stepping down to 3:1

Nora has been cruising along as 3.25:1 for the last 3.5 weeks. Her wean schedule calls for going 3 to 4 weeks at each step down. Originally we thought that we would keep 3.25:1 for 4.5 weeks, because we started mid-week and will make changes on the weekends. She is doing so well that we decided to go for the next step down last Saturday. All is well!

We’ve been looking forward to 3:1 from the meal planning angle because many of the whole foods that make up the backbone of Nora’s diet are well above 3:1, like avocados, cream cheese and macadamia nuts. There are a few others that are at or near 3:1 that now will support the ratio instead of dragging it down, like walnuts. I suppose “so much easier” is really a matter of perspective. After doing it for a few days we can see the difference between 3.5:1 and 3:1.

This month’s ratio change brings her up to 26 g of protein, her full requirement for a kid of her age and size. Her carbs will only come up 0.5 g. That means that this month we adjust to getting more cheese and meat in her diet, and the step downs after this will be marching up the carbs while decreasing the fat.

I like to have at-ratio popsicles made for easy afternoon snacks. I didn’t re-do any recipes for first step down, but I redid them last weekend to get to 3:1. It made me realize that we don’t have a lot of at-ratio recipes for her. Instead we build meals around various foods that she requests, adding the necessary fat to the meal in other ways. I recalculated her berry frozen yogurt pops and chocolate chip frozen yogurt pops and made a batch of each at 3:1 this weekend (note that the linked recipes are at 3.5:1, but decreasing the cream or increasing the berries, yogurt or protein powder appropriate changes the ratio). Very little has changed in those popsicles, Nora won’t even notice the difference, but now we have a stash of snacks to get us through a few weeks.

This is a short and sweet update, so here’s a fast keto-fact observation: Nora very rarely ever passes gas. If she does toot or burp, it’s a huge hilarious surprise! Maybe other keto-families have noticed this phenomenon too?

Keto kids make the news

Last year when Nora was approaching her 1-year seizure free anniversary, I called our local newspaper because I thought they might be interested in her story. They love a good human interest story and I wanted to spread the word about the keto diet as a treatment option for childhood epilepsy. They wrote a great article that surprised us by being put on the front page of the Sunday paper! (Here’s the post on last year’s story).

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Nora and Dr. Wray. Photo credit: Amanda Cowen, Corvallis Gazette-Times/Mid-Valley Sunday

This year, approaching Nora’s 2-year seizure-free anniversary, I contacted them again because sometimes they do small “updates” on stories that they have been following. Instead of a small update, they asked if they could send a reporter and photographer to Nora’s doctor’s appointment and this time they told us that it would appear on Sunday’s front page.

But the real news is what else happened in that year–not to Nora, but to another child from a nearby town. Because we told Nora’s story and the newspaper decided it was big news, the Swick family got the resources that they needed, the right diagnosis and started the diet one week later. The story doesn’t say it explicitly, but Jaron has Doose syndrome and the diet is the best treatment. How they made the journey to the diet is in the article, and now Jaron is big news too–and seizure free!

Here’s the article: http://www.gazettetimes.com/news/local/seizure-stopper-word-of-diet-program-spreads-now-helping-philomath/article_ebd16b88-cbd4-11e3-b0bf-0019bb2963f4.html

I’m so relieved for Jaron and his family. We’ve been blogging to reach out to others who need support because we’ve received so much comfort and ideas from other families who have taken this path. May we all pass it forward so that all kids get the right treatment when they need it.

We want to thank Doernbecher Children’s Hospital and Dr. Wray for opening their offices to tell Nora’s story. Dr. Wray joined the practice just when Nora needed him, during her own “crisis mode” moment. We would not be here without his expertise and smile. Going to the doctor is a treat when we get a smile and giggle every time. They are running a top-notch program. We look forward to working with the ketogenic diet program to set up a formal support group this summer, so stay tuned for developments.