Nora Update: April 1, 2012

Seizures per day before the diet:  17.3
Seizures per day now:  0.8
Reduction:  95%
Half-life:  14.2 days

Nora is continuing to do well.  We’ve had total seizure control for about 20 days since the last bump.

Her mood, energy, and intelligence have all been good.  Amazingly, she seems to have been able to avoid the cold that has passed through the rest of the family.

We have good signs of general development.  She hasn’t napped for several days now, and been sleeping solidly for 11+ hours each night.  Her pull-up has been dry in the mornings.  (I have a conjecture that peeing in her sleep makes her more restless.)  She has in general been bright and shiny.

The constipation issue is also well controlled.  We track her daily fiber intake and also make sure she is taking 2 teaspoons of CALM each day.

We are hopeful that with a week or two if we can continue such good seizure control, we can try to decrease her Depakote.

Daily myoclonic seizure count with an exponential fit.

Daily myoclonic seizure count with diet metrics.

The Keto-Raw-Food-Vegan Diet

This diet has not been challenging enough, so Nora’s now going raw food vegan too.

Happy April Fools Day!

I did find a fabulous hummus-substitute for Nora on the raw food vegan website of some of our favorite musicians, Jónsi of Sigur Rós and his partner Alex. Together they make music and art in Reykjavík, Iceland, and shared some of their raw food vegan recipes on their website. Click on the cool hand-drawn cookbook on the right to “flip” through the recipes. They’ve also made videos to demonstrate their “cooking” techniques (remember–this is raw food). I find it touchingly earnest and adorable somehow.

Macadamia nuts are often used in the ketogenic diet because they have a tremendous amount of “good” vegetable fats and low carbs. And they are totally delicious and cost their weight in gold (almost). I keep them in the fridge to be sure to keep them fresh. Nora has not been a huge fan of eating the nuts themselves, but I’ve tried to get them into her diet in other creative ways, like this.

I like the idea of putting Macadamia Monster Mash in half of a small pepper and broiling some cheese over the top (damn, I forgot about that vegan thing. And that raw food thing). But because Nora is only 3, she still isn’t a big fan of mixing her foods. One day she will appreciate a more complex presentation.

Here’s the recipe (I amended it a bit for Nora’s taste) and video for Macadamia Monster Mash:

Macadamia Monster Mash

Nutrition Information for Macadamia Monster Mash. From

200 g macadamia nuts (about 1 cup, but for the diet I weigh it for precision)
1 tsp dried parsley
1 Tbsp lemon juice
1/3 c water

Mix in food processor or blender until creamy.

0.5 g net carbs
0.7 g fiber
0.7 g protein
6.3 g fat

The original recipe adds a clove of garlic and salt, which will slightly alter the nutritional information.

Nutritional information is based on a 12 g serving, about 1 tablespoon, but I weigh it on the scale instead of measuring it with a tablespoon.

Served on a flacker or low-carb tortilla, roll a little ball of Madacamia Monster Mash in some shredded cheddar cheese, spread on a slice of turkey and roll it up, or just eat it with a spoon. I’ve also mixed her coconut oil into it for easy serving.

One little sidelight: when I was making the recipe the first time, I realized that although water does not add any macro-nutrients, I need to specify the amount of water that I use in the recipe to get the correct nutritional information per serving. Why? Because the water adds weight/mass to the serving, in a sense “diluting” the other ingredients. A 12 g serving with water has different values than a 12 g serving without water. Details, details.