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.
For 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!
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.
So nice to read such great updates on Nora! 1:1 and not worrying about protein sounds so wonderful! 🙂
Indeed it is!
I have read your entire blog several times over in the last year as the Keto diet has been on the back burner for treatment for my 6 year old Annie. Well, the day has come and we are officially on the MAD, waiting and hoping for something good. Thanks for all that you have posted- your blog is like my Bible these days!!! Two questions: one, is there a support group up and running for Keto families (I heard you were working ont hat!) and two, any chance I could email you personally with more questions?
1) The support group has been on our todo list for a long time. We’d like to get started on it soon and will blog about it when we do.
2) Yes we’d be happy to help; I’ll email you.
Thank you for this blog. 🙂 I am an adult who has been sz-free on meds, but the meds are brutal on my cognition, alertness and mood. (I teach in higher education, so that is….challenging to manage, as I’m sure you can imagine.) Your site has been a great help as I transition onto the diet.
So glad to hear that it is helpful. I was just talking to a friend who was asking about the diet for an adult friend too. I pointed out our post Feeding Our Kids, Ourselves about how Ted and I have changed our diets too. I wouldn’t say that we are technically on MAD, but we definitely eat in that direction and when you can see how much great food is available you can leave behind the carbs.
If you see any keto recipes written in grams that you would like translated into common measurements, just let me know. Also be aware that newer recipes are better than older recipes. I’ve learned a lot about cooking with nut flours and other alternatives!
Hi how is. Nora’s wean going? I’ve been reading your blog for while, our son, Curtis, is on MAD and seizure free for over a year. His history is much like Nora’s. Glad she has been doing so well. We will wean hopefully this coming Dec and I am already nervous!
Nora is doing great! Still seizure free. Congratulations on the progress Curtis has made. Over 1 year seizure free is fantastic!
We will go back to the doctor this month to talk about next steps. We will post an update then.
Hi There Christy and Ted,
Your website has been a tremendous help to me while I embark on this journey. And, I’m so glad to hear that Nora is still doing great.
I’m trying to navigate the MAD diet, however, don’t like the “estimating part” and want to have more of a serious calculation. I have a few questions about your spreadsheet if you’d be willing to email me privately?
We just posted a version of the spreadsheet. Download that and take a look and see if it works for you. Let me know if you have any questions.