Monthly Archives: November 2014

Help, Thanks, Wow

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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

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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

Screen Shot 2014-11-01 at 11.55.30 AM

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.