Chocolate Chip Keto Ice Cream Pops

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After adding this to the list of Nora’s Top 15 foods, I realized I may be over compensating a bit. Does anyone else get a homemade chocolate chip ice cream pop almost every day?

But her devotion to this snack is an indication of just how good it is. I tasted the un-frozen vanilla ice cream mixture when I was making it last time, and it is even better than commercial vanilla ice cream in my opinion; more creamy and less sweet. Add in the Green & Black’s 85% Dark Chocolate, and it’s decadent.

You might wonder how Nora gets to eat something like fancy chocolate. The answer lies in the nature of a good chocolate bar: it’s cocoa, sugar and cocoa butter (fat) plus a bit of other ingredients for texture. The darker the chocolate, the more cocoa and less sugar is added into the chocolate bar. The darker and fancier the better! And the cocoa powder in the bar actually has a bit of fiber! Nora’s 4 g of 85% dark chocolate has 1.1 g of net carbs. To compare, 4 g of Green & Black’s Milk Chocolate has 2.3 g carbs, twice as much. Granted, one square of chocolate is about 4 g, and 1 of those per day delivers just over 10% of Nora’s carbs for the day. But what a nice way to have your carbs, no? If it were me, I’d pick the square of chocolate too.

The fancy chocolate also comes in a vanilla ice cream package, enough to boost the ratio to almost 4:1 per ice cream pop.

Happy ice cream eaters! Anders get some of the standard ice cream recipe which I put into the ice cream machine to freeze. With sugar, it works like a charm. I create the chocolate chips by melting about 8 squares of chocolate, then drizzling it into the top of the ice cream machine while it is still churning and almost frozen. Mmmmm.

Making this kind of rich custard-style ice cream is a time intensive process, so I will walk through the steps. I simultaneously make 1 quart of Nora’s ice cream and 1 quart of the regular sweetened ice cream for the rest of us (be prepared by buying an extra 2 pints of heavy cream and an extra dozen eggs). But Nora’s quart lasts a whole lot longer. I can get 18 pops out of Nora’s recipe. That’s almost 3 weeks worth of ice cream if she eats it almost every day. I can usually space it out over about 1 month, although there is complaining on non-ice-cream-days.

This is the Vanilla Bean Ice Cream recipe, adapted from David Lebovitz. When I add 4 g of Green & Black’s 85% Dark Chocolate, the nutritional information becomes 1.89 g carbs, 1.68 g. protein, 14.01 g fat, 0.4 g fiber. You can adjust the final numbers by choosing a more or less chocolate or a different addition for flavor.

Vanilla Bean Keto Ice Cream. Nutritional analysis by www.caloriecount.com

Vanilla Bean Keto Ice Cream
250 ml (1 cup) whole milk
500 ml (2 cups) Organic Valley heavy cream
102 g (6 large) egg yolks
3/4 teaspoon vanilla extract
1 vanilla bean
Pinch of salt
No-carb sweetener as desired (I use a bit of Nora’s Cytra-K)

 

 

 

Plenty of Nora recipes call for egg whites, but you can also freeze them in ice cube trays and use them when you need them. They freeze very well.

Gently warm the milk, 250 ml (1 cup) of the cream and salt in a medium saucepan. Scrape the seeds from the vanilla bean into the warm milk and add the bean as well. Cover, remove from the heat, and let steep at room temperature for 30 minutes.

Measure the egg yolks. One benefit of doing 2 batches at the same time is that any extra yolk from the keto batch can be added to the conventional batch. You will be left with a lot of whites, so have a plan (see picture).

In a separate medium bowl, whisk together the egg yolks. Slowly pour a bit of the warm milk and cream mixture into the egg yolks, whisking constantly, then scrape the warmed egg yolks back into the saucepan.

Pour a bit of the warm cream mixture in with the egg yolks and combine, then dump back into the pan to cook.

Stir the mixture constantly over medium heat with a heatproof spatula, scraping the bottom as you stir, until the mixture reaches 170 degrees and thickens to coat the spatula. I use an instant-read thermometer to be sure that it reaches a safe temperature, because this is the only time you will cook the egg yolks before they will be consumed. This step takes at least 5-10 minutes, so be sure that your children are occupied. It would be a pity to burn this glorious mixture. When I make 2 separate batches, I do not cook them simultaneously. One at a time. Ice cream is too important to rush.

Strain the mixture to capture the vanilla bean shell and any egg white solids that hitched a ride in with the yolks. It won’t hurt to leave them in, but you might find the funky texture occasionally if you don’t strain it out.

Meanwhile, put the remaining 250 ml (1 cup) cream into a large bowl with a fine mesh strainer on top. After reaching 170 degrees, pour the custard through the strainer and stir it into the cream in the bowl (see picture). Add the vanilla extract and any desired sweetener, and stir until cool over an ice bath or put into the refrigerator immediately to cool and stir periodically while cooling. Chill thoroughly.

At this point, I just put the keto version of the ice cream into the freezer and stir throughout the day. Because it doesn’t have any sugar, it still has a higher freezing point so it will immediately ice and collect on the sides of the ice cream machine. It just doesn’t work. Even if you were to stir constantly, it would freeze solid and never get that scoopable ice cream texture, so why bother? I just try to break up the ice crystals periodically as they are forming by stirring periodically and keeping the vanilla beans suspended throughout the mixture for flavor.

When the ice cream is semi-frozen you can weigh it out then create the chocolate chips in each serving. This can be a few hours after you’ve initially frozen it, or you can take it out of the freezer anytime and let it soften until you can get some out of the container. I do 4 pops at a time, so it gets frozen and softened several times before the final pops of the batch are eaten. It does not seem to effect the quality of the ice cream.

First, weigh out 44 g of the ice cream (according to my calculations–you could re-calculate for your purposes).

Next, weigh out 4 g of Green & Black’s 85% Dark Chocolate (or other according to your calculations) in a small silicone pinch bowl. The bowl must be completely dry, or else the chocolate will seize when heated. Microwave for 20-30 seconds and it will be completely melted. Be careful, because the bowl may be hot when you remove it from the microwave.

Drizzle the chocolate over the bowl of cold ice cream. It will solidify again when it hits the cold ice cream. Then you can mix it up, breaking the chocolate apart more and making chips!

You could certainly serve it just like this. Nora likes to see the chocolate on the top. But to make several servings at a time it’s nice to make them into ice cream pops. The pops also avoid the too-solid vs. too-liquid states of keto ice cream. It just doesn’t get that nice in-between-liquid-and-solid state of conventional ice cream with sugar (I discussed this issue in a previous post, so we find ways to work with the properties that we’ve got (which is frozen solid) instead of working against it.

After you have drizzled the melted chocolate on the cold ice cream, mix to incorporate, breaking the chocolate further into the “chips” familiar from commercial ice cream. Finally, you have a bowl of chocolate chip ice cream. Re-freeze for a bit and serve with a spoon (if you freeze it solid again you will have to let it soften before serving). Or scrape it into ice cream pop molds to serve later. These are Tovolo molds, made to look like an ice cream cone! They hold up to about 52 g of ice cream, in my experience, and work well with the 48 g of ice cream here. I make up 4 at a time, weighing and mixing them one after the other, so that they are ready to take out of the freezer on demand. And they are in demand!

 

 

6 months seizure free!

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It’s Nora’s 6 month seizure free anniversary!

We had the Charlie Foundation’s Silver Dollar Pancake recipe for dinner, with berries and cream. This is a gem of an original recipe. Mmmm, macadamia nuts. They are a decadently delicious gluten-free alternative for pancakes if you haven’t tried them yet. Nora is not deprived in the least.

To mark the occasion I also made bacon. Mmmmm, bacon.

For those keeping score at home, this meal was:
35 g Silver Dollar Pancake batter
16 g Wood Family Farm smoked bacon
10 g strawberries (warmed from frozen)
10 g raspberries (warmed from frozen)
15 g cream (1 T, spread on pancake)
1 gelatine Cytra heart + 1/2 T cream
Sleepytime Vanilla Tea (no carb)

Nora licked her plate clean. The rest of us had buckwheat pancakes because macadamia nuts cost a fortune and I still had some mix to use. Although we were out of syrup, so we had berries and applesauce on top.

Happy pancake eaters!

 

Fiber Roll Tips

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When we were living in Norway, we took a trip way up north to Tromsø, a beautiful city that is home to the world’s northernmost university and beer brewery, and where we saw the most spectacular display of the Northern Lights. We travelled with some other exchange students from Germany, a few from the former East Germany. One of the interesting observations we made of the Germans was their method for choosing bread. They went around the bread section of the grocery store looking for the heaviest bread in the smallest package, in other words, the densest bread possible. Note that we were in Norway, where bread was already dense and hearty by American standards. But they were horrified that we ate the goat cheese (geitøst), so we learned to respect our differences.

Making fiber rolls for the first time reminded me of the Germans, which isn’t a good sales pitch for fiber rolls. The bad news is, when Nora first looked at the fiber rolls, her reaction was, “yuck!” The good news is, when she tasted them her reaction was “yum!” They are so tasty and bread-like that the density didn’t turn her off on the first attempt. On the second attempt I changed my procedure and made them lighter, and now they are in the list of Nora’s Top 15 Foods.

Dawn Martenz at ketocook.com is the keto-genius mom behind the recipe. I didn’t even think about attempting keto-bread, but Dawn came up with a clever combination of ingredients that really works. Her instructions are simple and easy to follow, but if you are a scattered mama like me, it might not occur to you that the procedure for making these rolls will matter a lot to the outcome. Here I will share my more detailed procedure for maximizing the rise in the rolls to create the illusion of more bread and more surface area and air pockets for spreading butter!

The Fiber Roll Recipe is approved by the Charlie Foundation and can be found at http://www.charliefoundation.org/recipes/item/978-high-fiber-rolls.html. The psyllium husks can absorb liquid, including oils, so it can carry an amazing amount of fat without feeling greasy. The original recipe gives several ratio options; I use the 3:1 ratio. The recipe also notes that the recommended daily intake of psyllium husks for children ages 6-12 is 1 tsp, or 3 g. Because Nora is only 4, I divided the recipe into 6 rolls instead of 4 to reduce the psyllium husks to 2 g per roll. Therefore, the nutrition label that you see below reflects those changes to the recipe. Each roll contains 18.4 g of dough.

Nutritional Information for Fiber Rolls, 3:1, 6 servings. Analysis by www.caloriecount.com.

Fiber Rolls, 3:1 (6 servings)
50 g egg
24 g olive oil
4 g apple cider vinegar
5 g water
12 g Whole Psyllium Husk (bought as a fiber supplement at natural food stores)
13 g Flaxseed Meal
1 g baking powder
1 g baking soda
pinch salt and dried thyme

Preheat oven to 300. You definitely want your oven preheated when the rolls are ready to pop in, so turn it on before making the rolls.

Mix egg, oil, vinegar and water very well. Add the psyllium husks and let the dough rest and stiffen to the consistency of oatmeal. This is where I deviate from the original recipe, and here’s why. It’s food science time.

Yes we did do the volcano a few summers ago, and it was underwhelming. But it did very slowly engulf the Lego Star Wars villans in it’s watery pink lava. Mission accomplished.

Normal bread rises because of the action of yeast eating up the sugars and releasing carbon dioxide into the elastic glutenous dough. That takes some time to accomplish and the gluten can take the stretch, which is why you let dough rise. But these rolls are not elastic and not using yeast; they are a “quick bread,” in part using baking soda and vinegar to create the air bubbles in a fast-acting chemical reaction that is over in less than 1 minute. Remember making a “volcano” explode in school, or with your kids? You mix together baking soda and vinegar and it poofs the liquid out of your volcano by releasing carbon dioxide bubbles. But that reaction doesn’t last very long–you put the ingredients together, it fizzes out of the volcano, it’s over in a flash, and you are left with a watery mess that will take 10 times as long to clean up than the cheap entertainment it provided. Imagine that happening inside your fiber rolls.

The recipe also calls for baking powder, which has slow-acting chemical leavening agents that work when heated. That’s why you have the oven pre-heated. You want to take advantage of that fast-acting reaction between the baking soda and vinegar, getting it into the oven to cook, trap the air inside the rolls, and get the baking powder action to continue to hold it up while it solidifies. That’s how you get the maximum air into your fiber roll bread. But it requires you to act fast.

Notice that you didn’t put the baking soda or baking powder in with the psyllium husks and liquid ingredients in my instructions; you are keeping them away from the vinegar to minimize the amount of time between starting that chemical reaction and getting them into the oven. The original recipe says to put everything together and let it sit for 5 minutes to absorb the liquids, but it will take at least 5 minutes to weigh out your rolls. By allowing the psyllium husks to absorb the liquid first, you don’t let the chemical reaction blow itself out before you get the rolls in the oven. That was my mistake the first time. After I changed my procedure, the rolls were at least 50% bigger and much airier.

The dough before it goes into the oven.

Back to the recipe instructions:

While the psyllium husks are absorbing the liquid, in a separate bowl mix together the flaxseed meal, baking soda, baking powder, salt and thyme (or other dried herb of your choice for flavor). This is your dry mixture. When the psyllium husk mixture is thickened, quickly stir in the dry flaxseed meal mixture. Don’t wait–weigh out the dough for each roll, 18.4 g in my recipe making 6 rolls. They don’t need any extra handling, just ball them up gently. Put them on to your baking sheet lined with parchment or silicone baking surface, and into the oven as fast as possible!

Bake 30 minutes.

See the air bubbles? Good for holding more butter! It has the texture of a hearty bread and a nice flavor from the flax seed.

Not only is it amazing to make a satisfying bread with 0.2 net carbs (in my 6-roll version), but getting it at a 3:1 ratio without feeling heavy or greasy is astounding. We can make a meal with a buttered fiber roll and several other moderate-ratio ingredients and you would never think so much fat would be hiding in there.

And Anders likes them too! I  know that we have several readers that are using the Modified Atkins Diet or who have low-carb and/or gluten-free diets for other health reasons. Here is the recipe for the MAD version at a 1.25 ratio in standard US measurements. If you want the short version of the instructions, see below. Only the measurements of the ingredients are different.

Nutrition for 4 Everyday Fiber Rolls at 1.25:1 ratio (MAD version). Analysis by www.caloriecount.com. Net (effective) carbs = 0.2 g per roll.

Everyday Fiber Rolls
1 large (50 g) raw egg, beaten
1 tsp (4 g) olive oil
1 tsp (4 g) apple cider vinegar
1 Tbsp + 1 tsp (25 g) water
2 Tbsp (12 g) Whole Psyllium Husk (bought as a fiber supplement at natural food stores)
2 Tbsp (13 g) Flaxseed Meal
1/4 tsp (1 g) baking powder
1/4 tsp (1 g) baking soda
pinch salt and dried thyme

Preheat oven to 300 degrees.

Thoroughly combine egg, oil, vinegar and water. Mix in psyllium husks and let it absorb the liquid until thickened.

Meanwhile, combine the flaxseed meal, baking powder, baking soda, salt and herbs in a separate bowl and mix well.

Quickly incorporate the flaxseed meal dry mixture with the thickened wet mixture. Quickly form into desired number of rolls (4 in the original recipe at 28 g each, if you are measuring). Place on parchment lined baking sheet or silicone baking surface. Bake for 30 minutes.

Enjoy fresh from the oven!

 

Nora’s Top 15 Foods

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If you’ve followed Nora’s Special Diet, you know that I try out a lot of recipes. Some of them are one-hit-wonders. Some will come back for a special occasion or a change of pace. They’ve also been following seasonal availability of different vegetables over a year of the diet. But I thought it would be useful to peruse Nora’s daily food log and see what she eats on a regular basis and share that with you.

If you are thinking about the starting the diet or moving from Modified Atkins to a higher ratio, I find it helpful to think about the great foods that you CAN eat on the diet instead of all of the things you can’t eat. So many creative cooking parents have made great substitute for kids’ favorite foods, so eating keto doesn’t seem so weird after all! Nora’s list is a mix of regular natural foods right from the grocery shelf and great recipes created by parents. As always, double-check the nutritional information on the products you use and check with your dietician when in doubt.

I was also guided by my recent experience of being away from home for a few days in the last month, so I made sure that Ted had the go-to foods so that he can easily pull together meals while parenting 2 kids. It turned into a “top 15” list which is not particularly elegant, but I couldn’t exclude anything that made the cut, and couldn’t think of any more! Ranked unscientifically by my intuition about the frequency, ease, and deliciousness of each food. Drumroll, please………….

#1: B^3and 8 g apples

Our B^3 recipe has evolved since the original post, but I don’t think it’s particularly useful to post the changes. We’ve just jiggered the proportions as Nora’s ratio has increased and added coconut oil. This is her daily morning snack, also delivering her daily vitamin supplements.

1 snack serving of B^3 and 8 g apple. The silicone bowl we use is on the right and the tablespoon and apple are for size reference.

It is worth explaining how Ted has changed the B^3 portioning procedure to make it more efficient. He has taken over the B^3 lately and his way is pretty clever. First, liquefy the B^3 by warming it up (placing the container in a bowl of hot water works well). Measure each portion by pouring into a smooth-sided small silicone bowl. It’s darn nice to have about 7 or 8 of these. Crush each day’s supplement with a mortar and pestle and mix into the liquefied B^3. Place the silicone bowls in the refrigerator until hardened. Pop them out of the bowls and into a container–they will hold their shape! Dole out 1 per day with the appropriate amount of apple, 8 g for Nora to get her 3.5:1 ratio snack. No more daily crushing of vitamins. Save it for your weekend fun.

And this is a MUST HAVE snack for Nora. Don’t you mess with her PB and apples. The practicality plus frequency and love is why it’s #1. She is still capable of major meltdowns, and missing this morning snack has been grounds for a major meltdown. We can now substitute 12 g of carrots for the apples if Anders has eaten us out of our apples supply (which happens regularly).

#2: Flackers

Fabulous food, fabulous name: flax+crackers=flackers. They are simply pressed, baked flax seeds. We can buy them in the store and they are ready to go. Nora likes the rosemary version. I have not looked at the nutritional info for the new flavors (currant sounds good and carbier). Nora gets about 8-10 grams with a meal, at least once per day, which is about 2 crackers (they are about 4 g each but we weigh it out on the gram scale). Per gram of flacker, they have 0.04 g carbs, 0.2 protein, 0.3 fat, and 0.28 g fiber. By themselves, they are a 1.33:1 ratio and will hold 4-5 g of butter each to bring up the ratio of the whole meal. They have been with us since the beginning and we are addicted to Flackers.

#3: Bandon Natural Medium Cheddar Cheese

Who doesn’t love cheddar? Ok, the lactose intolerant and dairy allergies among us. Sorry. But for a kid who loves dairy, it has no carbs, 1.3:1 ratio of fat to protein. Chunks of cheddar for protein in a meal is easy, or shred it to top other foods.

#4: Olive Tapenade

We found a brand of kalamata olives (Peloponnese) with a 4.5:1 ratio so we are sticking to it. I have been surprised about the variation in the nutritional information on kalamata olives, so I think the brine must be important to the carb count. We serve the pitted kalamatas on their own as part of a meal, but I also made a recipe for Olive Tapenade with a 7.9:1 ratio because of the extra olive oil. It’s great to serve with Flackers and other lower-ratio foods to get the meal up to 3.5:1. I will post it soon!

#5: Tuna salad

I use Sea Star Tuna direct from the Oregon Coast and highly recommend using very high-quality canned tuna steaks. They are more expensive than your “chicken of the sea” variety, but I think it’s worth it for flavor and texture. We mix it with full-fat Greek yogurt and English Double Devon Cream because we don’t like mayo at our house, but there are plenty of recipes out there with mayo if you prefer. Nora eats it with a spoon.  My version is 2.1:1 ratio, but we sometimes stir in a little more butter to boost the ratio and Nora doesn’t notice the difference. I will also post our Tuna Salad recipe soon.

#6: Strawberries & Raspberries

I’m grouping them together because they have the same carb profile in our calculations (0.06 g net carbs per gram of berry) and we use them almost interchangeably (which is not true of blueberries, which have twice the carbs per gram of berry at 0.12 g net carbs). Fresh or frozen, Nora eats between 12-20 g of berries for a bedtime snack with her steamed cream and coconut oil every night. She often gets some berries with meals as well, and they are a incorporated in many other recipes.

#7: Steamer Creamer

Many keto kids drink heavy cream as a major source of fat. We use Organic Valley Heavy Whipping Cream, as our dietician said it is the only major brand that consistently has no carbs. Each tablespoon delivers 6 g of pure fat. To be sure we get all of the fat evenly distributed, we dump the carton into a pint mason jar and mix in any fat that congealed at the top or stuck to the sides. We put cream into Celestial Seasonings Sleepytime Vanilla Tea (carb and caffeine free) to accompany some meals. In the beginning, we heated it in a pan with a little cocoa powder for hot chocolate, or heated it in the microwave. Until…

One day we were visiting our friends Cora and Mike, who have a fancy espresso machine. They steamed Nora’s cream and she declared, “this is REAL hot chocolate!” Mike and Cora had been considering getting an even fancier machine, and we relieved their guilt and gave them a reason to buy the new one by taking their old one as a hand-me-down. Now Nora gets steamed cream every night, with coconut oil and a crushed calcium tablet mixed in. The steaming does a nice job of emulsifying the additions, and you can add a drop of vanilla flavoring or a touch of cocoa powder for flavor as well, but she doesn’t mind it straight up. Lately Ted has put 1 piece of her strawberries in for flavor.

And mama gets espresso at home: win-win-win. Thanks Cora and Mike.

#8: Avocado

Nature’s wonder keto food: 3.62:1 ratio, high in fiber and fat, low in carbs. Cut, weigh and eat. Comes in bio-degradable packaging.

#9: Red Pepper

Or orange or yellow, Nora’s not a fan of green. High in flavor and fiber and low in carbs (lower than berries at 0.04 g net carbs per gram of pepper). Nora probably averages 14 g of red pepper per day, which is about 2-3 spears for the rest of us. It’s a little package of vitamins and yum that really makes a meal feel normal and healthy.

#10: Fiber rolls

Roaring into the “top foods” category are little dinner rolls of “bread!” And any ratio! I make the 3:1 version. And 2.5 g fiber! Developed by keto-mom extraordinaire Dawn at ketocook.com, approved by the Charlie Foundation, gluten-free and really delicious. Even Anders agrees. Last time I made them, he saw one on Nora’s plate said whined, “awww man, why does just Nora get one? Can I have one too?” Honestly. I’m going to post an ode to fiber rolls with my tips on getting them to rise to their fullest.

#11: Cytra & Cream Gelatin Hearts

Nora gakes 2 packets of Cytra-K crystals each day, dissolved in about 2 cups of water and served at meals. It is a prescription formula of potassium citrate to combat high blood acid levels that are a side effect of the diet. The crystals are flavored with saccharine and colored with red dye. As you can tell by my “top foods” list, I would normally not include this in Nora’s diet but the alternative is to make her drink baking soda water. We tried that, and it’s horrible.

Nora loved her Cytra drink at first (it’s pink and sweet!) but it has lost its shimmer after drinking it daily. Lately she is thrilled when I make it into gelatin snacks in her heart-shaped molds. She gets 3 Cytra gelatin hearts per day with meals, with cream mixed in for an easy delivery of fat. Unflavored gelatine is pure protein, so it’s easy to incorporate into the diet. Again, I will post that recipe soon too.

#12: PBJ Muffins

This is a recipe from the Keto Cookbook. I adjusted the recipe (see link) for a 3.5:1 snack for Nora. In the Keto Cookbook, they use 1 batch as a 400 calorie meal. I weigh out the muffin batter so that they are all the same, and make it into a 110 calorie snack. No need to weigh the muffins, just grab and go (although we do have to weigh the topping of PB/butter and berry, less convenient). I make a few dozen at a time and freeze some. This is one that Nora has requested to eat even after her diet is over, and I agree. They are delicious.

#13: Cheddar Crackers

Cheddar Crackers

Also from the Keto Cookbook. I weigh out 5 g of batter for individual crackers and dole out the number of crackers that work in a meal or snack. We have quantified them on a per-cracker basis in our database rather than by the gram, because they are pre-measured (so convenient). I have made up to 60 crackers at a time, and frozen some for later use. I use the original 4:1 ratio in the recipe, so I can add another low-ratio foods, like some berries or some cheddar cheese to balance out a meal or snack. Again, this is one that Nora and I will continue to make after the diet is over. Then I will also be free to eat them and no pre-weighing! I admit to snacking on a cheddar cracker now and then, but I know I have to save them for Nora.

#14: Keto Pizzas

And another hit from the Keto Cookbook! I make 4 pizzas at a time when I have the ingredients out. Nora has 1 for dinner and I freeze the other three. Pull one out of the freezer and put it in a 400 degree oven for 5-10 minutes. Happy Nora, happy mama on a night when I just don’t want to cook or when we have a babysitter. It’s pretty much perfect for a whole meal.

#15: Chocolate Chip Ice Cream Pops

This one made the list because Nora is demanding one for every afternoon snack lately. And who can blame her? They have chocolate chips made with fancy 85% dark chocolate and the ice cream is made with real vanilla bean. They are a labor of love, but I’ve figured out how to make a big batch so I don’t have to do it so often. And I make a batch of ice cream for the rest of us at the same time. It’s win-win again! Recipe and procedure to be posted soon!

I’ve promised you 4 recipes: Olive Tapenade, Tuna Salad, Cytra-Cream Gelatin Hearts, Chocolate Chip Ice Cream Pops, and my tips on Fiber Rolls. I really wasn’t trying to hold out on you, honest. I’ll get right on that. Ted has also been scheming a post with the daily routine. He has been putting together Nora’s lunches in preparation for days when we are at work.

And as an aside, we’ve noticed that Nora’s diet is almost 100% gluten free by default. Macadamia nuts are the secret ingredient in the baked goods. She used to eat a low-carb, high-protein tortilla, but she hasn’t wanted it lately and the last time she ate one, she had a rash on her face the next day. We are keeping an eye on that and will try an elimination diet approach: remove all gluten again for several weeks until her face is clear and offer gluten again to see what happens.

Finally, here is a typical meal and the breakdowns to get a sense of a meal with these foods. Seven out of the 15 are here, plus butter (which is a daily thing but didn’t deserve to make a “top food” list). Values all in grams. This was lunch on October 6: 350 calories, 2.5 g net carbs out of 10 g total for the day.

Food Net Carbs Protein Fat Fiber Ratio
Fiber Roll 0.20 1.50 5.30 2.50 3.12:1
6 g butter 0.00 0.00 5.14 0.00 —
2 T (30 ml) heavy cream 0.00 0.00 12.0 0.00 —
14 g avocado 0.30 0.28 2.10 0.70 3.62:1
14 g kalamata olives 0.93 0.00 4.20 0.00 4.50:1
18 g cheddar 0.00 4.50 5.79 0.00 1.29:1
20 g strawberry 1.14 0.00 0.00 0.29 0.00
1 Cytra gelatin heart (no cream) 0.00 1.00 0.00 0.00 0.00
Totals (g) 2.58  7.28  34.53 3.49 3.50:1

And for the visual (cream not pictured):

 

 

More thoughts on latest doctor’s visit

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I love Ted’s graph! A year ago at this time we were in the worst place for Nora, through October and November until we started trying the Modified Atkins Diet in December of 2011. We are so thankful that everything fell into place as it did: Dr. Wray joined Doerbecher Pediatric Neurology and started the ketogenic diet program (which was almost non-existant before then) just when Nora decisively failed her 2nd drug trial (first Keppra, then Depokote).

Dr. Wray was clearly delighted with Nora’s progress. When we discussed the “what if” scenarios of either a return of seizures or when she should be weaned off the diet, he said, “at this point, I’m learning about the diet from Nora. She’s teaching me.” He has never had a patient with myoclonic seizures that is doing as well with physical and cognitive development, and she is probably responding to the diet better than any other patient he has had on the diet. Nora is a mystery and we can only wait and see what unfolds for her. We can only be thankful that we are on the good side of this mystery.

And although she is only 4, he offered to relax her ratio if and when she is having trouble with compliance. With her great seizure control so far, he said that the ratio can be an open conversation between Nora and the rest of us. She’s happy, so I have no need to experiment to see what happens. As long as we can keep her happy and healthy on the diet, I’m happy keeping the 2 year clock ticking.

He was also pragmatic about when we start counting the 2 years. He said that she was responding to the Modified Atkins Diet last December, so he would potentially start counting from last December, even though she wasn’t seizure free until mid-April.

I have been very pleased with Dr. Wray’s pragmatic approach. We are all on the same team. But Ted and I are going to be extremely conservative on this. As long as Nora is happy and seizure free, I expect her to be in the diet at 3.5:1 until April 2014. If we have some indication that we can stop earlier or start reducing the ratio, all the better. If Nora gets ill or unhappy with the diet, we can reduce her ratio and see what happens. If she has a breakthrough seizure, we can hold the course or increase to 4:1. Decent drugs are still on the table if necessary. It’s good to know that we have somewhere to go. We have options.

After the Charlie Foundation Symposium, I came home wanting to know the underlying cause of Nora’s epilepsy even more strongly. If we know the cause, it will tell us something about why the diet is working for her and whether she is likely to develop out of it in 2 years. If we knew that the cause is something that she won’t grow out of for a long time, or ever, we can prepare ourselves and avoid the trauma of trying to go off the diet and finding out that she needs to stay on. So we will keep looking and learning. Until then, we are thankful for our good fortune of trying the diet early and keeping our fabulously unique, sharp and creative Nora.

I’m glad that Ted talked about advocacy, because now that Nora is out of crisis mode we are moving into advocate mode. I’m so glad that we started this blog, after so much encouragement from friends and family. At Nora’s last appointment with Dr. Wray, we also proposed starting a parent support group at Doernbecher Children’s Hospital in Portland. We’ve heard that this is the only keto diet program between Seattle and San Francisco, and there is no parent-to-parent support system. We felt alone when we started, but this is so much easier if we share the burden. We can reduce the start-up burden of the diet and help parents quickly surmount the learning curve, so they can move from difficult-diet-with seizures-mode into tedious-diet-routine-reduced-seizures-mode. It’s high investment, high reward if it works: saving your kid’s brain.

At the Charlie Foundation Symposium, there was a paper by Claire Chee, RN, at the Children’s Hospital of Philadelphia. We need our wonderful pediatric neurologists and dietitians on our team, but as Ms. Chee said: “We are the ‘professionals;’ parents are the ‘experts.'” We have the deepest gratitude to all of the other keto parents who have commented on our blog, giving us encouragement. Thanks for being on our team too. And thanks for including us on your team. We are here for you.

Neurologist visit and update

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Last Friday we went to visit Nora’s pediatric neurologist at Doernbecher Children’s Hospital in Portland.  The visit went well and I certainly get the feeling the medical team there is delighted to see Nora doing well.  I imagine that is both for her sake, and also as a welcome break from dealing with parents and patients that are still struggling, or just starting down the hard road of developing epilepsies and the hunt for seizure control.

Nora is doing very well.  She is about 5.5 months free of tonic clonics, and about 6.5 months free of myoclonics.  She is now 3 months off of anti-epileptic drugs, with the diet (and several supplements) as her only treatment.  Her physical skills and development are normal.  Her vitamin D excess has resolved itself (or was a faulty test result).  Her blood is still a bit on the too-acidic side, but the doctor felt that more potassium-citrate (Cytra) would probably not correct it, and since she is feeling fine, there is no need to treat it.  Because she is doing so well the doctor offered to try her on a lower ratio!  I was very surprised by this.  It’s an intriguing possibility, but both Christy and I feel that since Nora is healthy and having no issues with diet compliance, we’ll hold steady at 3.5:1 for the time being.  But it is nice to know that our medical team is open to trying a lower ratio should we run in to any compliance issues or blood acidosis issues.

We also had an interesting discussion on what would we would do if Nora had breakthrough seizures.  The doctor said that first, he wouldn’t necessarily escalate her therapy if there a few breakthrough seizures.  And he wouldn’t necessarily re-start the two year seizure-free clock!  (All this of course depending on the severity and number of seizures.)  This is a very interesting point.  To give you some background, one of things doctors and families strive for in epileptic kids is to get them two years of seizure freedom.  Exactly two years is of course a somewhat arbitrary guideline (e.g., why not 1.75 years, or 2.5?) but it is a fairly ubiquitous standard across pediatric epilepsy.  If a kid can go two years seizure free, there is (statistically speaking) a very good chance he or she will remain seizure free, even off of anti-epileptic therapy.  But this two year goal has a funny affect on parents: when you are in a period of seizure freedom, you fear not only the return of the seizures for the sake of your child’s well being, but also the “restarting” of the clock.  It’s the boulder of Sisyphus tumbling back down the mountain.  Each week, each day, each hour of seizure freedom is so hard-earned.  There is so much energy and work and stress invested in getting to that two year goal.  To have it start over can feel like such a defeat.

But for keto kids, the expectation from the start is that they will be on the diet for only a finite amount of time.  A typical course of treatment is 6 months to 3 years, depending on the age of the child, the efficacy of the diet and the cause or type of epilepsy, if known.  Also, most keto kids are on the diet for the very reason that they have not had complete success with drugs.  This all comes together to make a more fluid and complex treatment timeline than the “two years of Keppra and you’re done” route that some kids take (to paraphrase our first pediatric neurologist).

So our plan for now is, in the event of breakthrough seizures: hold the course to see if it is just a transient (e.g., diet administration error).  If the seizures persist, increase the ratio.  If the seizures still persist, try Lamictal.  (Honestly it would feel like a major setback to put her back on a drug, but it does comfort me a bit to learn that Lamictal is not too bad.  It has a rare but severe reaction you have to watch for initially, but otherwise it seems people tolerate it well.)  It is comforting to know we have a reasonable plan in place in the case of a relapse.

The doctor said another interesting thing: that there are not many kids in the world like Nora.  There are not many kids that have drug resistant myoclonic seizures without accompanying cognitive and physical problems.  It is a bit of a mystery, but after so much bad luck with Nora, we are grateful for this bit of good luck.  In fact, the doctor said he would consider further genetic testing on Nora and compare her with the very few other kids like her to see if there is some common genetic cause for their unusual course.  I also wonder if Nora benefited from getting her on the diet quickly.  Perhaps she would have developed more cognitive and physical problems if we chased her with drugs for years before turning to the diet.  In an interview with Jim Abrahams, he laments this: that although the diet was miraculous for his son, he wishes they had known about it sooner in the course of his treatment.

Hopefully as the medical community learns more, they can quickly identify metabolic therapy candidates and get them on it right away, instead of turning to it as a last resort after years of seizures and failed drug cocktails.  There is some advancement on this already.  In some epilepsy centers, the ketogenic diet is the first line of treatment for a very serious and severe form of epilepsy known as Infantile Spasms:  http://www.hopkinschildrens.org/tpl_news.aspx?id=5324 and http://www.youtube.com/watch?v=_1Jia_2HAp0.  In this type of epilepsy early diagnosis and treatment with the ketogenic diet can effectively “cure” the epilepsy.

Let me reiterate that we advocate the diet assuming it is the right therapy for a given patient.  In many cases, modern drugs will provide good control and effective treatment.  We advocate the increased acceptance and use of metabolic therapy for patients that are good candidates for success, and that doctors consider trying it earlier in the treatment, instead of as a last resort.

Back to Nora though: we are ecstatic to be where we are.  One year ago, Nora was having many seizures from week to week, and I was a wreck.  But we fought and pushed and although much uncertainty remains, we have come so far.

Here is her updated chart.

Seizure free for almost 6 months.   Diet ratio was nominally 3:1 from Jan 2012 through April 2012.  It has nominally been at a 3.5 ratio starting at the end of April; we have not recorded the actual daily ratios.

Eggplant Parmesan: Gluten-free and family friendly

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Nora’s portion of Eggplant Parmesan. Note that this is in an individual size ramekin, approx. 3 oz.

Ok, gluten-free is true. Family-friendly depends on who you ask. Anders would beg to differ. But you can also make this basic recipe for the whole family alongside your weighed keto-portion from the same ingredients. And I loved it.

When Nora tried it, she said “yummy.” But Ted had to spoon it up for her as the meal went on. Doing gymnastics on her patio chair was far more interesting than her meal. It wasn’t a “make this again please!” but it didn’t bomb either.

Yesterday afternoon we worked in the garden. We harvested our one pioneering Hokkaido squash (Margie, I think you are right that it is not a Hubbard, and Cora can confirm), about a pint of Good Mother Stallard heirloom beans that the kids shelled with me, and Nora enthusiastically brought in a few Little Fingers Eggplant and a green pepper.

Nora really wanted to eat one of those beautiful little eggplants. And we had to wonder how these plants are related to eggs. Turns out that early Europeans grew a white ornamental variety that looked just like goose eggs. Hence the name. But now we grow these beautiful deep purple eggplants and adore the color eggplant.

When Nora wants to try a new vegetable, I am on it. So while the kids watched Word Girl and Wild Kratts (thank goodness for late afternoon PBS programming), I made eggplant parmesan. The foundational recipe came from here: Baked Eggplant Parmesan. But I substituted flaxseed meal for the bread crumbs and flour for all of us and made a much smaller batch overall. For the whole family, you can follow the example of Nora’s recipe and just do the same procedure without weighing. I used 1 egg total: beat it with a bit of water, measured out Nora’s 8 grams, then used up the rest on the 2 regular eggplants for the rest of the family. You could also add ground pork sausage or beef if you want it meaty, but that would have been too much protein in this meal for Nora.

As always, calculate your own recipes with your own KetoCalculator. This is a guide for proportions that worked with this recipe, but if you are using different brands of cheese or making other variations, but sure of what you are feeding to your keto kid.

Nutrition information for 1 serving of Eggplant Parmesan. Analysis by www.caloriecount.com

Eggplant Parmesan
10 g olive oil
35 g eggplant
8 g egg, beaten with a bit of water
6 g of Parmesan Cheese, grated
3 g Bob’s Red Mill flaxseed meal
25 g Muir Glen Fire Roasted Diced Tomatoes
10 g Whole Milk Mozzarella
optional: fresh or dried oregano (not included in calculations here, but I added them to the dish for the rest of the family)

 Measure the olive oil into a smallish oven-safe dish, big enough to hold your eggplant slices in a single layer. Preheat the oven to 400, placing the dish with the oil into the oven while it is preheating and you are preparing the eggplant slices.

The measured ingredients for Nora’s Eggplant Parmesan. One Little Finger Eggplant from our garden was 35 g. Next, 8 g of scrambled raw egg. Then 3 g of flaxseed meal mixed with 6 g of shredded parmesan. All must get into the recipe.

Slice the eggplant into 1/4 inch rounds. If you are using a full-sized eggplant, you could cut it into smaller bite-sized pieces which will eliminate the need to cut it at the table.

Measure the beaten egg on to a small shallow dish. Measure the flaxseed meal and parmesan on to another small shallow dish and mix them well. You could also add some salt or dried herbs to the mix if you like.

Nora’s eggplant slices ready for baking. Note that I scraped the remaining egg, flax and cheese onto the eggplant slices to incorporate all of the measured ingredients into the recipe.

Coat each slice of eggplant with the egg. Then dredge each in the flax-parmesan mixture. My fingers got coated with the mixture as well, so make sure that you have a rubber spatula on hand to scrape as much back into the mix as possible. You’ve measured these ingredients and accounted for them, so they might as well get into the kid.

When you have all of the eggplant coated, take the pre-heated oil and dish out of the oven and lay the eggplant slices in a single layer. They will start to fry if you’ve let it heat up enough, so it won’t get soggy with oil. After you have them all in the pan, scrape any remaining egg over the slices, then scrape any remaining flax and parmesan over them. You want to get it all in there and it will bake together nicely. I had very little of the egg and coating leftover to scrape back in, so the proportions were just about right.

Put the pan back in the oven and cook at 400 for 5 to 7 minutes. Turn the slices over and return to the oven for another 5-7 minutes to cook the other side.

The finished eggplant slices. The family portion on the left, from regular-sized eggplants from the farmers’ market. Nora’s portion on the right, from the finger-eggplants out of our garden.

When the keto-portion of eggplant went into the oven, I made the eggplant slices for the family dish with the leftover egg and mixed up more flax-parmesan mix. They went into the oven in stages of 7-10 minutes in 2 pie pans because they were larger pieces of eggplant. The timing is not too critical, as long as the eggplant gets cooked on each side and is in the oven long enough to cook through and soften.

While eggplant is in the oven, weigh the tomatoes and mozzarella. When the keto-eggplant portion is done cooking, scoop some of the oil out of the pan with your rubber spatula and put it into a small ramekin or other ovenproof dish. Put 1/2 of the tomatoes on the bottom of the dish. Scape everything out of the eggplant baking dish into the ramekin, making sure to get all of the oil out. Top with the remaining tomatoes and mozzarella. Return to the oven for another 5-10 minutes to heat through and melt the mozzarella.

Same procedure to finish the family portion. Use the rest of the can of tomatoes or any sauce you wish, topping with meat if desired and cheese.

There are a lot of steps here and is not a quick meal, but it’s also not technically difficult to pull off and makes a meal for everyone. It would be worth keeping in your back pocket for a special occasion or weekend if you like Italian and want a special meal. It would also be easy to make a few portions at a time to be reheated another night.

The keto-version is very similar to the original version and was not overly oily, making it great for all of us (although I eyeball the oil for the family portion). That said, it is only about a 1.75:1 ratio, so you will have to supplement with other fat. Nora had some kalamata olives on the side, which are 4.5:1 on their own, which helped the ratio for her entire meal. Her bedtime snack is always a cream-steamer with coconut oil and a few raspberries to end the day right.

I plan to be posting fewer recipes as our quarter at Oregon State gets busier. Actually, I should be working on a paper right now instead of blogging…

 

 

Videos from the Charlie Foundation

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Ok, after this one we are going back to Nora’s story. But Nora’s story is just one of many, and we gain hope and inspiration from the other parents who have walked our path before us.

One other aside: I’m tired of hearing the ketogenic diet described as a “miracle.” It might look like it from the outside and might feel like it when seizures stop, but it’s scientifically studied, medically proven, and relentless daily work for the patients, parents and loved ones administering the diet. No magic or divine intervention required.

Charlie Foundation Family Day

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The biggest rock stars I met at the Charlie Foundation conference were the parents. First and foremost, Dawn from the KetoCookbook and www.ketocook.com, because she has given me so many recipes and ideas for making the food healthful and joyful on the diet. It was so great to say “thank you” in person! And other moms like Christine, Talia, April, Lori, Max’s mom, William’s mom…. the other moms… we were talking the language of keto and getting things done for our kids.

Just before I left I also had the chance to talk to Jim Abrahams, founder of the Charlie Foundation. He always had a crowd around him throughout the conference, but I caught him in a quiet moment and he really listened, cared and hugged me when I told him about Nora. He is genuinely empathetically relieved for every parent who gets their kid back. And on my final steps out the door, Nancy Abrahams was walking by and stopped me to thank me for coming.  I’m sure that she only knew that I was another mom, and that was enough. I also got a hug and thanked her, because I know what she went through as a mom. Jim is usually the public face of the Charlie Foundation, but Nancy has been there every moment, curing their son Charlie so many years ago. Charlie was also in attendance, and although I did not meet him personally he seemed like a lovely young man.

All of the parents agreed that when you are in front of that gram scale day after day, it’s a lonely world. The professional presenters did a beautiful job of summarizing the science for the families and reiterated the four big needs: awareness, access, availability and understanding. Parents have contributions to make to all four needs, but I think parents are the primary movers for the first 3.  The Charlie Foundation was started by parents, and look how far they have come. Jim summed it up for me: if there are 10 kids out there with intractable epilepsy, the diet will help 6 or 7. If there are 1,000 kids out there with intractable epilepsy, then 600 or more will get better on the diet. Do the math for the 2 million Americans with epilepsy, one-third of which are difficult to treat. He assumes that 60% will see some benefit from the diet (the studies vary). That means over 300,000 people could be helped by the diet. And there are only about 50 patients doing it in Oregon? There is more work to do. This isn’t about advancing an agenda or selling a pill, it’s about bringing this tool to families that are silently struggling and losing their kids.

I think that the biggest barrier is the perception that it is hard.  When we first asked about the diet in our dark days, we were told: “The diet works great, for kids on feeding tubes. For a high-functioning opinionated kids like Nora, it’s too hard.” That perception is still there among the neurologists at the conference, who are the true believers in its efficacy. I firmly believe that innovations by parents have made it easier for both the caregiver and the kids, and we continue to make it easier for each other. This is our job.

Which brings me to my work plan. First on my list is to have lunch with Dr. Koch, head of pediatric neurology at Doernbecher who had seen Nora early on, and update him on Nora’s story. We haven’t seen him since Nora started the diet and she transferred to Dr. Wray’s care. He needs to know how far we’ve come and that it’s not too hard. He is head of pediatric neurology at Doernbecher, and every neurologist and resident needs to put the diet on the table with families at all stages of therapy choice.

Ted and I also plan to start a parent support network at Doernbecher. Ted has also been reaching out to other parents online and feeling the need to help others. When a family initiates the diet, they should have an experienced buddy family. Ideally, there would be more dietician support, social worker or psychologist support and other help available, but I understand that those services are expensive and not covered by insurance in most cases, if a family even has insurance (I will omit my diatribe on insurance). This is going to have to be a volunteer initiative. One great mom from Israel, Talia, had a cookbook of her recipes bound and given to every family who starts the diet at their hospital. What a resource! We need that kind of help at Doernbecher to provide support for families.

In my remaining free time (yes, that both a joke and sincere), I’m going to contact our local media outlets and the surrounding metro areas. Even now, it seems that most families find out about the diet through their own research or media reports, then ask their neurologists to try the diet. Public attention must be drawn to the diet as a viable treatment option, particularly for those desperate families for whom all else has failed. As a budding economist, I hold to demand-side forces: increased demand will stimulate supply.

One take-home message for everyone: be pro-active in any medical situation you encounter. You have to do your own research into your options. You have to look at the studies and stories from other people in your situation. I’ve heard that from other family members who have serious medical problems, and now I have first-hand experience. Build a team of medical advisors which includes yourself. As Nora likes to quote from the book The Princess and the Peanut Allergy, “don’t be a quiet little mouse.”

Note: In the first version of this post I stated that 50 million Americans have epilepsy. That was wrong, it is 2 million. I re-worked the numbers but this totally a back-of-the-envelope calculation to demonstrate that diet therapy could help a significant number of people in areas where it is currently underutilized.

News from Charlie Foundation Symposium

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Wow. 450 doctors, researchers, dietitians and other medical professionals, with a handful of parents in the room. Four 2-hour blocks of 20 minute presentations on facets of diet therapy for neurological disorders from 8 am to 5 pm yesterday, same format from 8-12 this morning. I’m on information overload. Actually, I fell asleep last night at 6pm when I arrived back at the hotel, awoke at 9:30pm, and went back to bed until 6:30am this morning. I needed 12 hours of sleep to process.

And these aren’t 450 shmoes talking about a fringe diet. Researchers from Korea, Japan, India, Scandinavia, Germany and the UK have been very active in diet research, along with MDs and PhDs from Harvard, John Hopkins, and other major state universities and hospitals around the country. No one here wanted to throw the drugs out the window, and several doctors alluded to the fact that this is not a “natural” treatment. As with all medical treatment, it has a host of side effects and is dangerous to use with certain underlying medical issues and without medical supervision. But it is another powerful tool, and must be considered equal to the other tools in the neurologist/epileptologist tool box.

In summary, the ketogenic diet is the most effective treatment for epilepsies that are difficult to manage or resist drug treatment (aka, “refractory” epilepsy). The latest Cochrane review of the research found 4 random control studies (although the researchers here say one was overlooked) and concluded that the ketogenic diet has “effects comparable to modern anti-epileptic drugs.” The National Institute for Health and Clinical Excellence has accepted the ketogenic diet into epilepsy treatment guidelines, although it is still considered a tertiary treatment if “appropriate” anti-epileptic drugs fail.

The diet is also more successful in some identified epileptic syndromes than others, which might give clues to how it is working in the brain. For someone with an idiopathic (unknown cause) epilepsy like Nora, its efficacy might give some clues to the origins or type of epilepsy. It is important to remember that epilepsy is a symptom with an underlying cause, but those causes are not well understood for most epilepsies.

Although the conference is organized around the ketogenic diet for epilepsy, we heard several presentations on the use of similar diet therapies for other neurological diseases. This part of the conference was intriguing, because I know someone that is affected by each one of these ailments. Like epilepsy, most arise from some underlying genetic or metabolic disfunction.

One of the most intriging, which we heard about from a clinical perspective from both a researcher and an MD-parent, is the application of diet treatment to autism. As many as 40% of autistic kids will have seizures, often at puberty, which are atypical in presentation and treatment. I would recommend the work by Jane Buckley, MD, who wrote a book about her daughter’s experience, which she presented at the symposium.

Researchers have also been inducing ketosis in rats and mice to heal traumatic head injury (the Army is funding some of this research, and yes, the researchers also induce the traumatic head injuries to see how they heal). They are also looking at use of the diet in the management of pain and inflammatory diseases. They have some promising results so far that show a short-term ketogenic diet could promote healing and reduce inflammation and pain.

We also heard presentations about research into the ketogenic diet for ALS (Lou Gehrig’s disease) and Alzheimer’s disease. In both of these cases, the hope is to slow down the progression of the disease. So far in mice, they have found that decreasing carbs (hence glucose availability) improves mitochondrial function, so neurons function longer. There was also mention of Parkinson’s and stroke patients benefitting from similar use.

One of the most exciting and possibly controversial uses of a ketogenic diet is the treatment of cancer. Dr. Joseph Maroon gave a fantastic talk about a devastating brain cancer and the potential for diet treatment. The logic is simple: glucose is cancer’s food. Cancer can’t survive on ketones, but our healthy cells can. There is some exciting research and anecdotal evidence out there, so I would stay tuned to those developments while keeping traditional effective treatments in the tool box.

Another researcher gave a startling presentation on using the ketogenic diet to reverse diabetic kidney failure in mice. He said that when he proposed this research project to one of his research fellows, she doubted that they would even get the ethics approval for the project because it’s a mousy death sentence. Diabetics die from ketoacidosis (which is different from ketosis on the diet, but similar mechanism). However, they got approval to do the study and not only did the mice not die, but their diabetes-induced kidney disease was reversed. They had to stop the experiment because the control mice (the non-diabetic mice) were dying of natural causes first! All of the diabetic markers were reversed in these mice, and his explanation was the absence of glucose. By withholding carbs from the diabetic mice and switching their fuel source to ketones, they were able to reverse the effects of the diabetes.

What many of these lines of research have in common is an underlying cause: a dysfunction of the use of carbohydrates, which are converted to glucose, in the body. One researcher laid it out as a metabolic paradox: too little carbs make us ill and too many carbs make us ill. And different bodies seem to have a different “goldilocks” zone for carbs, where are carb intake is just right. Nora’s zone is very low right now. A type 1 diabetic’s zone is very low. Someone who is genetically predisposed to type 2 diabetes has a moderately low zone. If we consistently eat outside of our carb-tolerance zone, either too little or too much, we get chronically ill. And eating on the low side of our carb-tolerance zone can be healthier than exceeding our carb tolerance because our bodies have this great back-up energy source: ketosis.

The most relevant research for all of us is about maintaining the health of the body that we have. Several doctors and researchers brought up the anti-obesity effects of the ketogenic diet. The keynote speaker on Wednesday, who I missed because I was en route, was Gary Taubes, a public health writer who brings together a lot of this science in his book “Good Calories, Bad Calories.” DO NOT try to do a full ketogenic diet on your own. What the research suggests is that we could all do to eat on the low side of our carb-tolerance level for long-term health. I personally can attest to the benefits by my small reduction in carbs since I have been administering Nora’s full ketogenic diet. I’m not going to get evangelical about it, but I do think that the science is there. We have a serious public health issue with obesity and related illnesses that is fixable with a sensible shift in diet.

There were also presentations about the basic science explaining the efficacy of the diet. In short, we still don’t know how it works. There have been studies in rats and mice that show both “morphological and functional neuroprotective effects” on the brain in diverse models. Essentially, they are studying our bodies’ power plants, the mitochondria. When the 100,000 mitochondria in each neuron get glucose, they get really excited and too much excitability becomes a seizure. By depriving the body of glucose, we don’t allow so much excitement. Ketones and the channels that they travel also have some inhibitory and protective effect on neurons. If those neurons get too excited, normal brains have some ways to shut that down. But if those shut-down mechanisms aren’t working and the brain can’t tolerate much glucose, ketones (from fat) are a replacement energy source for the mitochondria. So we deprive the body of sugar (glucose) and supply it with fats (ketones) and function without seizures. Now that I summarize it, this is what we already knew, but the current research on mice and rats provides richer detail to the biochemistry than I am able to convey here.

Ok, so we know that it works for a lot of epileptics and has promise for other diseases, even if we don’t know exactly how, particularly for epilepsies that are not controlled by the arsenal of anti-convulsant drugs. We can take it off of “fringe” status. But this needs to be more widely disseminated to front-line neurologists. I made a note when any of the MDs or PhDs made a passing comment such as “it works, BUT it’s hard.” Even these true-believers hedge their bets, but very few of them have had to do it for their kids.

At the wrap-up session, the leaders of the basic science panel summarized where we are and where we have to go. They laid out for 4 facets: awareness, availability, accessibility and understanding. They asked how clinical practice and basic research can better talk to one another. Good questions and comments were made from the audience, but I felt compelled to stand and say my piece. I get up and talk in front of a classroom twice a week for the whole school year, and never has my heart felt like it would leap out of my chest as it did today. I got in the last comment/question of the session, something like this (I didn’t write it down):

I want to thank all of you for being here for our kids who need this treatment and this research. I’m a parent of a 4 year old on the ketogenic diet. How many parents are here, by the way? (10-20 hands raise). I appreciate the comments made in the wrap up session but notice that you point out the needed ongoing relationship between clinical and research practice. Please remember to include parents in this relationship–we have your data! We are here doing this diet every day and we need to be a part of this conversation. You are building a platform for the diet in the medical world, but we are the third leg of the stool.

To which the other parents started a round of applause, joined by the rest of the room. I was moved by the reception, and relieved to have said it. Several parents (and some others) recognized me after we adjourned and thanked me for my comment, which was gratifying. Even in this great group of people who are aware that they are marginalized for advancing this treatment, the very beneficiaries of this treatment are inadvertently marginalized. I don’t feel that there are any bad intentions; this is just the status quo of the medical and scientific community. At least twice I was told that I am a “well-informed parent,” as if there was any other way to be. And it wasn’t just me feeling like I was invisible while in plain sight. After my comment, dedicated and well-informed parents came out of the woodwork, and I look forward to meeting more of them tomorrow.

Again I want to point out the first 3 points made in wrap-up session: awareness, availability, and accessibility. Parents have a huge role to play in those areas by reaching out to one another. When you are in the neurologists office, you are at your most vulnerable. If a neurologist tells you it’s too hard, as many here at this meeting were still saying as an aside, you might not do it. We need to talk to the neurologists and give them the science and tell them that it’s not THAT hard, but we need to be there for parents to make it not-so-hard. If you think the ketogenic diet is hard, try watching your kid have seizures day in and day out. That’s hard. And we can make this much easier for each other by paving the way for others.

I look forward to family day tomorrow to see how other parents are reaching out, and to thank those that paved the way for us. Then we will work on continuing to lay out a path for others. That’s what Jim and Nancy Abrahams did when they started the Charlie Foundation. Meryl Streep did it when she took the lead role in “First Do No Harm,” and that was her call to action tonight. We will pay it forward.