Monthly Archives: April 2012

Diet and Treatment Update

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As we reported last week, Nora had another tonic-clonic in the early morning hours of her sleep (boo). That makes 3 of these while on the diet, but the last 2 have NOT been followed by myoclonic seizures (yay).

Although seizure-freedom is the goal, we are realistic about the fact that seizures will still pop through. Each one poses the question: “What now?”

One option is to consider this the status-quo for the moment. Because the reality is that kids will continue to have breakthrough seizures until they die out for good. Some silly superstitious part of me had the idea that the end of this must be symmetrical to the beginning. She started out with 8 tonic-clonics before the myoclonics started. Now the myoclonics are done, and she will have 8 tonic-clonics before it is over. 3 down, 5 to go. Rationalization is a powerful thing.

On the other hand, we can look for more seizure control. Our first instinct is to move toward a stricter form of the diet. She has been on a 3:1 ratio (fats to carb+protein). The traditional keto diet starts out at 4:1, so we have some extra room to move if she needs even stronger ketosis. We also have not been focused on the perfect ratio for every meal during the day, opting to load a little more fat right away in the morning and before going to bed. We could try a more consistent ratio all day, as in the traditional keto diet.

This is all extra hard because the last time we saw her doctor, she was doing great and he said that he would wean her from the Depokote if she maintained seizure freedom for 2 more weeks. Her first tonic-clonic came right at that 2 week deadline, which was frustrating. But he said again that he would still consider weaning her … and then another seizure happened. After this third one, he said that his top recommendation would be to switch her to another drug. I was shocked. He told me the side effects of the drug options (one of which included myoclonics–geez), and we know the horror of weaning one drug and ramping up another. We talked through the combination of diet-drug options and all that we know about each, and he left the final choice to us about the next course of action. But still, I’m mystified by his recommendation. It plants so much doubt–in his judgment and our own. Doc, Ted and I should all be experts on Nora’s case by now. We all want these seizures to stop showing up. And it is disconcerting that we do not agree on the next course of action.

I also talked to Nora’s dietician, who did a good job at trouble-shooting the factors leading up to her seizure. Nora had built up a sleep deficit because she started giving up her nap. She was also a little constipated for a few days. She also had a little more carb than usual (very little, and barely breaking 10 g one day because we mis-recorded one food). The dietician was not too worried about it because she said that most kids have breakthrough seizures, but we can always try to do more to be consistent and help avoid them. She agreed with us that we could do more with the diet first to see if we can get better seizure control, so I feel more at peace with this decision.

We feel very strongly that continuing to tighten up Nora’s diet is the best course of action. We’ve started giving her a 3.5:1 ratio of fat to carbs+protein and being sure that her ratio is 3.5:1 after lunch and at bedtime. I am going to meet with the dietician this week and get some keto diet training and learn about their keto calculator program. Meanwhile, Ted has set up his own keto calculator spreadsheet to help more with meal planning. We will keep trying to find the easiest ways to make the diet more effective for Nora, and hopefully we will see the end of these tonic-clonics. Or maybe there will be 5 more to go. Rationalization is a powerful thing.

Tips on Heavy Cream

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Nora goes through a lot of heavy cream. She has at least 1/4 cup every day, most of it as “hot cocoa” as a bedtime snack.

We heavily rely on it as a source of concentrated fat. But we have learned from our dietician that Organic Valley Heavy Cream has been the only brand that her patients have been able to consistently rely upon to get 6 g of fat per tablespoon and 0 g of carbs. Other brands often contain a bit of the lactose (sugar) that should be left behind after they separate the cream, but they report 0 carbs because they are allowed to round down.

In addition, an at home tip: We often find that the fat separates and clumps within the carton of heavy cream. Big chunks can be stuck to the side or floating, so the fat distribution is uneven for each serving. We have learned to pour the whole pint out into a glass mason jar and stir it well initially and before serving. This last week, we were not doing that. There were probably several nights when Nora was not getting the required amount of fat in her hot cocoa before bed. I really noticed it when I used the last of the cream to make the scones. The cream just looked thinner to me at the very end of the carton. Another opportunity for measurement error.

Details matter. My brain is too full of details.

Raspberry Scones

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A labor of love. Emphasis on labor.

The ketogenic diet relies on a precise measurement of macronutrients. So any recipe that results in clumps of food, particularly carby food, is a bit dangerous. I worked very hard to make sure that each scone was uniform and consistent. I will describe my process and tell you what I learned about baking for my keto kid.

This recipe is adapted from Candice’s Low Carb Recipes (blog moved to new site 4/13): http://tmstrevival.wordpress.com/). She is a baker by trade and successfully lost weight with a low carb diet, which she continues. One general lesson I have learned is to take the process seriously. When it says to use frozen butter, use frozen butter, not softened butter. We are trying to re-create baked goods that are judged by their resemblance to their carby parentage. Sometimes it takes a little extra attention to detail to use materials with a vastly different make-up to make a high-quality product.

Raspberry scones

1/2 cup (56.8 g) Bob’s Red Mill Organic Coconut Flour, divided into 6 Tbsp and 2 Tbsp
1 tbsp (10 g) Golden Flaxseed (whole)
2 teaspoons (10 g) baking powder
1/4 teaspoon (1.5 g) salt
6 Tablespoons (85.2 g) unsalted butter
60 g unsweetened raspberries
3 large (150 g) eggs
1/3 cup (80 g) Organic Valley Heavy Whipping Cream
1 teaspoon (4.2 g) pure vanilla extract

In large bowl mix 6 Tablespoons of coconut flour, flax, baking powder and salt. Set aside.

In a small bowl mix cream, eggs, and vanilla with a fork until all combined. Set aside.

Cut in FROZEN butter into your coconut flour mixture using your hands or a pastry blender until a course meal texture. I broke my pastry knife some time ago and have not replaced it. I used one of my hand mixer beaters to squash the butter into the flour and also used my hands. You can see the size of my course mixture.

Slowly add *almost* all of your liquid egg and cream mixture either mixing with hands or fork. Mixture will be runny. Add your extra 2 Tablespoons of coconut flour now and mix until thickened. Let it sit for a few moments and it will thicken as the coconut oil absorbs the liquid.

I calculated the recipe with only the batter, not the berries, and came up with 400 g of batter. Therefore it could make 20 scones of 20 g of batter each. However, after weighing the dough for each scone, I only had enough to make 18 scones of 20 g of batter each.

With each 20 g of dough that I measured, I then measured in 3 g of raspberries. Now I had 23 g of raw scone material for each one.

Here is an example of one imprecise measurement that I encountered in the overall recipe. Because the recipe calls for mixing in almost all of the wet ingredients, some of the mass is left out of the dough. I felt confident that at least I knew how much was in each scone, particularly how much raspberries were in each scone.

Place each measured dough ball on a parchment paper lined baking sheet and put them in the freezer for 20 minutes.  Try to do this process rather quickly and efficiently, because you will want them to stay cold. Next form the dough into triangles. Nora knows that scones are typically triangle shaped, and presentation is as important as taste to her. After shaping, place dough in the freezer for 20 minutes again.

Preheat oven to 425F. Brush the scones with remaining liquid cream/egg mixture.
Bake for 15-20 minutes.

Let cool. Here’s the interesting food science part. Remember that I put 23 g of scone batter and berries into each one. When I weighed them after baking, they were 19 g each, and quite uniformly so. What happened? 4 g of steam came out during baking and cooling. That’s not very much water overall, but it matters when we are weighing and serving our keto kids, depending on how sensitive your kid is.

From all of this I learned that when I put my ingredients into the recipe analyzer, it simply smashes it all together and divides by the number of servings. It is very accurate for raw things, like B^3 and Macadamia Monster Mash. But it does not consider cooking and the loss of steam, and therefore the loss of mass. Note above that the nutrition label says it is a 23 g serving, but in the caption to the nutrition label I note that it is a 19 g scone. Tricky. I have not calculated this for my other baked recipes. For my purposes I think that they are close enough because we are not using the strictest version of the keto diet, but I plan to ask our dietician if they consider these things when they make recipes. Maybe it’s close enough that it is within the margin of error.

As hard as we try, there is measurement error in everything that we feed our kids. We weigh portions out, but we did not churn the milk into butter or determine the meat-to-fat ratio in that slice of bacon. We have to watch out for the places where large and significant measurement error could creep in, particularly in the carb department, like a scone that gets 6 g of raspberries and another that gets 2 g of raspberries if the recipe was made in the standard way of mixing and baking it all together, then cutting it up.

Now the important part: yum, these scones are good. They got the approval of Anders, his friend Henry, me, and Grandma Sheryl too. They are a great option for any low carb dieter or for someone who is gluten intolerant. Coconut flour is the magic ticket. Even without added sugar and non-sugar sweeteners, they are darn tasty. Nora eats them for breakfast with her 5 g coconut oil mixed with a teaspoon of butter.

On the emotional side, it seems to really help Nora when other people get to share some of her “special” foods. She was so happy when our friend Mara, who is gluten-intolerant, enjoyed the cupcakes that I made for Nora to eat at Anders’ birthday party (I will post that recipe sometime too–when I can do a controlled weighing like this again). She kept offering another one to Mara for the joy of sharing. It helps her to feel a little more normal, while we also remind her that almost everyone has their own food issues for different reasons. Mara can’t eat wheat, I can’t eat eggs, lots of people can’t eat peanut butter, or milk, or cheese, or yogurt. I guess we are all a little bit ~different~.

What goes up…

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Seems that we are looking at a seizure pattern. Nora had another tonic-clonic in her sleep around 5 am again this morning. Grandma Sheryl was sleeping with her. Poor thing.

This one was also about 1 minute, but seemed a little stronger. Nora slept much longer into the morning and was a little more wobbly than usual in her mood, speech and movement. Just like she was very very worn out.

After she had breakfast she started to perk up and was out on the trampoline by 9:20 in her poofiest fairy dress. I had already decided to work from home today, so I’m hanging out in the bedroom trying to do some class reading and listening to them play in the living room. She seems to be back to herself.

We are looking at some reasons for another seizure, as usual, but all we have is a series of weak links, no major failures. Maybe she has a bodily rhythm that tries to reject the diet and its benefits, and it breaks through when she is in her vulnerable transitions between sleep stages. She was pining for my toast this morning again, but she hasn’t tried to take me down and devour it herself. She has some uncommon self restraint.

More chats with the dietician and doctor ahead. We will see if there are any pearls of wisdom, but I expect more shoulder shrugs. We keep moving on. She is still far and away beating all of the benchmarks for diet success. One seizure every 2-3 weeks surpasses the 50% reduction of seizures that is considered success.

The Virtues of Fiber

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Fiber is our friend. It is counted as a carb on nutritional labels, but we can subtract it out of the “total carbs” to get effective “net carbs.” It lets Nora eat fabulous things like La Tortilla Factory’s Smart and Delicious Low Carb, High Fiber Tortillas. Nora eats some of these tortillas every day, either in 1/8 sections (4.5 g) or 1/4 sections (9 g). They are big, so that little part of a tortilla goes a long way. I know the nutritional specs by heart–1/4 of a tortilla has:
1.5 g net carbs
2 g protein
0.75 g fat
3 g fiber

Wowza. And they taste good, in addition to being quite sturdy. Nora eats them with her “cinnabutter” (butter mixed with a bit of cinnamon, sometimes also delivering coconut oil), as a quesadilla several times a week, as a pizza “crust,” and in our latest version, a “dogsadilla,” wrapped around a hot dog.

Fiber is also our friend for reasons that we all know and love: it gets the poop out. As we have learned the hard way, constipation = seizures. I don’t fully understand the technical explanation (it has to do with the vagus nerve), but our keto doctor says that it is extremely common, in addition to jiving with our experience.

And the keto diet is quite constipating. We’ve tried several things suggested by the dietician. Miralax is a gentle laxative, but we are wary and have not had great luck. We have given Nora a magnesium supplement called Calm that comes in a no-carb “lemonade” flavor, which helps to relax the muscle walls to ease the poop out. We have mixed the lemonade version with the unflavored version at a 2:1 ratio to get more supplement and less flavorings. Nora likes having something tasty to drink. We took a break from Calm supplements for awhile because of a separate acidity issue (more next week on that), but Nora seems a bit constipated again, and I’m wondering if the break from Calm is the culprit. We’ve started giving her 1 teaspoon mixed in water in the morning and 1 tsp in the evening again.

We also give her baths in epsom salts as a way to absorb more magnesium. Ted is a big fan of the epsom salt baths, and it’s darn nice for her.

Back to fiber. The last time she was constipated, we talked to the dietician about her fiber requirements. Looking back, it seems odd to me that they don’t make this part of the keto calculations. If constipation is a problem–let fiber do the job! More bulky yummy foods! Have your red peppers and avocados and raspberries and eat them too!

The dietician said that a rule of thumb for a child’s fiber requirements is to take the child’s age and add 5. So Nora needs 8 grams of fiber per day. We had started tracking it just before talking to the dietician, and she wasn’t too far away from that. Since then, we have tracked fiber along with her carbs, protein and fat. She normally gets 9-12 g of fiber per day now. But another thing to remember: Fiber bulks up the stuff passing out, so can be a constipation threat if you don’t drink enough water. So keep on the water requirements too.

Nutrition information for 1 Tbsp of Bob's Red Mill flaxseed meal.

Nora now eats several high-fiber fruits and veggies per day, and we pick up extra fiber in other ways, like her fabulous tortillas. As I mentioned in the B^3 post, I add flax meal to recipes to up the fiber content. I add some flax to almost everything I bake. The carbs in flax are purely fiber, so it adds nothing to the carb count, only to fiber, protein and fat. In addition, it has all kinds of great fats. Look at that nutritional information! 0 net carbs, 2 g fiber! When we need to push more fiber, we mix it in to butter and serve it on a flacker. Oh! Flackers are awesome too! Crackers made out of flax seeds, pressed and baked together. They are tasty. I know the nutrition info of 1 flacker without looking too:
0.35 net carbs
1.65 protein
2.65 fat
2.33 fiber

As a rule of thumb, I now look for fruits and veggies that have net carbs equal to fiber. So at least 1/2 of the total carbs come from fiber. Avocados are the gold standard. Red pepper has been Nora’s go-to veggie for months now. We have just discovered the amazing raspberry. Unfortunately, I have the impression that many frozen raspberries are pre-sweetened, so check your brands. We are lucky to live in the heart of berry growing country (along with growing almost everything else), and we can get frozen Stahlbush Island Farm unsweetened raspberries all year. A few raspberries have been Nora’s reward for drinking her baking soda water (more on the acid issue later). I’m also planning on making raspberry scones tomorrow. I suspect that there is not more raspberry-love in the low-carb community because of a lack of unsweetened frozen berries. I will sing their praises here.

For other fruits and veggies, we note the fiber but it’s not so great. Apples are not so great, but Nora won’t give up her 10 g of apples (3 tiny slivers = 1.25 net carbs, 0.25 fiber). She was pining after our sweet potato one evening (funny how that happens with this diet), so I measured and gave her a chunk. I don’t remember the numbers, but it was a big chunk of her carbs in a very small (but tasty) package. We don’t eat sweet potatoes in front of her anymore. We had our first spring asparagus tonight, and I was happy that it met my rule of thumb, although Nora was not enthusiastic.

My message to keto familes–make fiber happen!

Cheddar Bread

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When Nora first started a diet therapy, we began with the least-extreme diet that has worked for treating epilepsy: the Modified Atkins Diet (MAD). As part of my education, I borrowed the Atkins weight loss book from the library (the man knew how to sell an idea) and several Atkins/low-carb cookbooks. This is a modification of a recipe from one of those sources.

I made it quite a long time ago (which in my world, is 2 or 3 months). Nora requested it again last week, so I made it up for her. She really likes it. I don’t like the taste of the rice protein powder, but my taste doesn’t matter one bit!

Nutritional information for Cheddar Bread. Based on 8 servings. Analysis by www.caloriecount.com

Cheddar Bread

1/3 c (37.4 g) Bob’s Red mill Soy Flour
1/3 c (42.6 g) Source Natural’s Brown Rice Protein Powder
1/2 tsp baking powder
2 large eggs
1 Tbsp (14 g) Greek Gods Traditional Plain Greek Yogurt*
1 Tbsp (14 g) English Double Devon Cream*
2 tbsp (27 g) olive oil
38 g shredded cheddar cheese

Preheat oven to 375. Butter 8×4 inch loaf pan.

Combine soy flour, rice protein and baking powder in a small bowl.

With hand mixer, combine eggs, yogurt, double cream and olive oil until smooth. Add dry ingredients and beat until just combined. Fold in half of cheddar.

Pour batter into pan and sprinkle remaining cheddar on top. Bake 25 minutes or until cake tester comes out clean.

Refrigerate.

*The original recipe called for sour cream, and I did make it with sour cream the first time. This time I did not have any sour cream at home, so I substituted and adjusted the recipe. If you want to use sour cream instead, substitute 2 T for all of the yogurt and English Double Cream. Re-calculate nutritional information.

As always, I gave you the brands that I used for each ingredient. If you use a different brand of soy flour or protein powder, you should adjust your nutritional information accordingly. I don’t see why whey protein powder wouldn’t work, but I have not tried it.

Nutrition based on 8 slices, at 30 g each. Nora normally eats a smaller slice, maybe 15 g. But I have found that if I make portion sizes too small in this recipe analysis tool, it will drop small values, like fiber. We both use the fiber number to see the “net carbs” in a food, and to keep track of how much fiber Nora is getting daily. So sometimes my recipes intentionally show larger portions, and I re-calculate based on this info for Nora.

Nora’s typical 15 g serving would be:
0.65 g net carbs
2.35 g protein
4.1 g fat
0.25 g fiber

And I would normally serve with a teaspoon of butter. The bread is not crumbly (hmmm, could it be the fat and cheese?) so it is nice to put a slice in the toaster (carefully) or under the broiler after taking it out of the fridge. Nora really digs the “toast” consistency.

The caloriecount website gave this recipe a B-! That is the highest rating I’ve seen for any of Nora’s recipes. Normally, they get a D. Good points are always that they are low in sugar (yeah) and bad points are that they are high in saturated fat (yeah too). It is interesting to always see how this external “health” and weight loss site views the diet that is so effective for my kid. If only they knew.

Efficiency is Life

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Nora needs several supplements everyday, some multiple times a day. It’s tedious to crush tablets and add them to foods on a meal-by-meal basis, so here’s one of my time saving processes to ease the daily grind.

Peanut butter (B^3) and apples (10 g = 1.25 g carbs) is Nora’s morning snack, and nobody better mess with it. It’s also a great fat and supplement delivery system.

First, I make a big batch of B^3 (that’s B-cubed, aka, B*B*B for those not math-inclined). Peanut butter, sunflower seed butter, and butter. Give it a bit of body and fiber by adding some flax:

Nutrition for B^3

Nutrition information for 1 Tbsp B^3 from www.caloriecount.com

B^3
1 cup butter
1/2 cup Adams 100% Natural Peanut Butter
1/2 cup Sunbutter Organic Sunflower Seed Spread
1/2 C Bob’s Red Mill flax meal

Soften by bringing all ingredients to room temperature, then blend well. I am careful not to whip too much air into the mixture, as I measure it by the tablespoon. Of course, it may also be weighed for precision.

I think this completely filled up a quart jar last time I made it. Refrigerate and it will keep a long time. At 1 tablespoon a day, it lasts a while.

The B^3 is now ready to be made into 1 tablespoon servings and loaded with supplements. It’s a great delivery system because the taste of the supplements is masked by the nut butters.

Adding supplements to B^3

Nora gets 1/4 of an adult Centrum every day (her diet does not guarantee her the required vitamins and minerals), 1 tablet of carnitine (an amino acid that helps with processing fats), and 200 mg of folic acid (helps with thinning hair due to the medication). She also gets calcium supplements, but we do not add them here. Any chewable kids vitamins have carbs to make them tasty, so those are out of the picture for Nora. Of course, we can’t expect a 3 year old to swallow pills, so we crush them into a powder with a small mortar and pestle and incorporate them into her food.

I start an assembly line process by measuring 1 tablespoon of B^3 into 4 small dishes. I crush 1 day’s supplement tablets into a powder and add it to each bowl of B^3. That way, she gets a consistent daily dose. I mix in the supplements and put the little bowls in the freezer to harden.

Frozen B^3 + Supplements

When the mixture is hard (it does not have to be frozen solid), I use a melon baller to scoop it all up into a little ball.

Then I put each ball into a container and keep it in the refrigerator. That keeps the mixture solid enough to stay separate, but gets pliable quickly when it is ready to eat.

It is a bit of work, but I love having little balls of B^3 to grab out of the fridge when I’m preparing each day’s meals. Meal preparation is enough of a chore without getting out 3 more supplements to add to Nora’s food. We can put a few week’s worth in the fridge and keep it on hand.

Finished B^3 + Supplements

Productivity is happiness. Maybe that statement is a little too strong. Concentrated tedium is preferable to daily tedium.

 

 

Update

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Nora is doing well.  She has not so far has another tonic clonic since April 5, and significantly, she has not had any waking myoclonics in the aftermath.

We have upped her ratio a little bit, and especially made sure she gets a good dose of fat right before bed to try to limit morning seizure activity.

Daily myoclonic count with model.

 

NoraDiet_y12m04d14

Daily myoclonic count with diet metrics.

So far, so good today.

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Quick update since yesterday’s early morning tonic-clonic seizure:

Nora is going strong. She had a great day yesterday, and is her regular self today. Her ketone level seems fine and we have not seen any waking myoclonic seizures. She has had 1 after falling asleep at nap and bedtime, but we don’t really count those because she is in the a sleep transition stage when myoclonics are most expected and normal for everyone. We do use them as a kind of signal that she is still vulnerable, but thankful that they are not breaking through when she is most robust while awake. We are hoping that this bump is much smaller than the one about 1 month ago.

We suspect that the timing of her food and fat delivery in the last week is the culprit, particularly the 2 days leading up to the tonic-clonic. She had not been eating much lunch with her babysitter for a variety of timing reasons, so she would get a big slug of calories all at once after I got home in the afternoon instead of spreading it out throughout the day. She was also eating fewer overall calories as a result, so there were fewer grams of fat required in her bedtime snack. Yesterday we were very conscious to leave a large amount of fat for her bedtime snack so that she would have enough ketones to sustain her until the morning.

A special thanks to Grandma Margie for visiting this week. It’s been great to have extra help and support here, and Nora sure loves her G’ma Gigi. She’s a delightful playmate!

The dance continues

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Nora had another tonic clonic in her sleep at 6 am this morning. Grandma Margie had just returned for a visit and was sleeping with her.

On the bright side, it was very short and mild. It’s also a vulnerable time for the brain–the brainwave changes in and out of sleep states in the early morning make seizures more likely. We have other anecdotal evidence of early morning seizures in people on the ketogenic diet, both because of the sensitive sleep state and ketosis is lowest early in the morning. I’m not too terribly worried about it, but it’s always disconcerting to see a seizure.

Nora slept for about another hour after the seizure and had a very mild postictal state also. No more vomiting or sleeping on and off for hours. She seemed a little slower in the morning, not quite bursting with energy as usual, but we took her to gymnastics at 9 and she had a great time. Seems like it will be a normal day. She seemed to have high ketones when we tested her this morning, so hopefully that will protect her from myoclonics returning.

However, when this happened 5 weeks ago she also had a great day-after. Then the myoclonics started again on day 2 and lasted for 2 weeks. Tomorrow will tell whether we are in seizure-land again for awhile. But I hope that this time will be milder and shorter than last time, until this eventually fizzes out for good.

But we are disappointed, particularly because we were counting down to a seizure-free deadline. Last time we saw Dr. Wray, he said that if she stayed seizure-free for 2 more weeks, which would have been Friday, he would probably start weaning her off Depokote. I’m curious to see how this changes his decision on that issue.

In another side-light, Nora’s blood test from last Friday turned out well, except that the HCO3 levels in her blood were low. I’m a little confused on this issue because I received differing information on the phone from the nurse and from the doctor via email. In any case, her blood is a little too acidic, which is somewhat expected on this diet, but if it gets out of control it can lead to a serious illness (metabolic ketoacidosis, as I understand).

We’ve been dancing around the issue all week because we can’t get an appropriate supplement to neutralize the acid. The first one called into the pharmacy was a “delicious grape flavor,” which is code for “CARBS” to me. In fact, it seemed to be carb-free but had sorbitol, a sugar alcohol that interferes with ketosis for some people. We did not give her any of it (and it wasn’t covered by insurance AND it can’t be returned). The doc called in a different formula, but that apparently has been discontinued. We can give her baking soda (dissolved in water or other fluid), but it doesn’t taste good. We will keep working on that issue, but in the meantime she does not seem to have any symptoms of the acidic blood issue and the doctor says it is highly unlikely that was related to the seizure this morning.

Updates to follow as this dance continues. Never know what the DJ will be cranking out next.