QS Interview: Epilepsy’s Big Fat Miracle

Sam, age 9, is the son of my Wired colleague Fred Vogelstein and his wife Evelyn Nussenbaum. Last year, Fred published a remarkable story in the New York Times magazine, Epilepsy’s Big Fat Miracle, about how he and Evelyn treat Sam’s epilepsy with a high fat and nearly zero carbohydrate diet. In an average week, Fred wrote:

Sam consumes a quart and a third of heavy cream, nearly a stick and a half of butter, 13 teaspoons of coconut oil, 20 slices of bacon and 9 eggs.

This dietary treatment dropped the number of Sam’s seizures from more than a hundred a day to about 30; the addition of two drugs got them down to fewer than six.

Fred’s account is fascinating, please go read the whole thing. I called him soon afterward to ask him some questions about how exactly he tracks Sam’s diet so closely. A few days later I interviewed Evelyn. Keep in mind that Fred and Evelyn are not tracking only calories, but also the composition of the food Sam eats.

Fred gives a brief picture of how they do it in his story:

Evelyn, who gave up her career to take on the now full-time job of feeding Sam, plans meals on the kitchen computer using a Web-based program called KetoCalculator. It is hard to imagine how to administer keto without it. A meal for Sam might have eight ingredients. Mathematically, there are potentially millions of combinations — a bit more of this; a bit less of that — that gets you to a 400-¬calorie meal and a 3-to-1 ratio. KetoCalculator does the math. Every ingredient — butter, cream, bacon, oil, eggs, nuts and fruit — is weighed to the 10th of a gram on an electronic jeweler’s scale. When Evelyn comes up with a recipe that works, she hits “print” and files it in a black loose-leaf binder. We now have more than 200 recipes.

—-

Gary Wolf: How can you track Sam’s food composition down to the tenth of a gram?

Fred Vogelstein: The person you should talk to is Evelyn. She’s on the front lines.

GW: You weigh everything, right?

FV: Yes, on a Jennings CJ300. It is sold as a jewelry scale.

GW: You would never just estimate? Say, half a banana?

FV: No, because you are not only trying to get exact ratio of fat to protein and carbs combined, but also trying to hit a specific calorie target. In order for the diet to work, every meal has to be finished. You have to start with what Sam’s caloric intake is, so you don’t wind up giving him too much food for dinner. Otherwise, he can’t finish it, because he’s not hungry. We tried a Low Glycemic Index (LGI) diet – you can eat carbs that do not raise your blood glucose levels quickly. Then we tried a modified Atkins diet, then this.

GW: Do you keep a record going back in time?

FV: When we started doing LGI and modified Atkins, we were using a diet program, that kept track of everything that we did. When we switched to the ketogenic diet, we got access to this program called Ketocalculator. It was designed a decade ago and you must be a licensed health care provider to use it. KetoCalculator has enormous food database. It does a wonderful job of giving you access to the food database, and letting you find ingredients and add them to meals, but it stops there. It doesn’t even do a very good job of taking all your meals and making them easy to find. We print out the menus and punch holes in them put them in a black loose leaf binders, alphabetically.

GW: This sounds very tedious.

FV: People used to do without any kind of calculator at all.

——

GW: What are the categories?

Evelyn Nussenbaum: The database shows protein, fat, carbs, cream, water.

GW: Cream?

EN: Cream is the biggest part of this diet, so it is in a separate category. But there is cream with 40% fat, or 36% fat. You have to track this.

GW: Who controls access to this program?

EN: You have to go through a hospital that has a ketogenic diet program, with a registered dietician giving you a login.

GW: Are there any tools that are more generally accessible?

EN: There is one called CalorieKing. It is not bad for going on a diet, but it is not nearly as precise as KetoCalculator.

GW: Where does the data come from?

EN: Manufacturers round up and down to the nearest gram. But the KetoCalculator gets the secret dietary information from the manufactures. They have this data, but it doesn’t get onto the food label.

GW: What if the food you eat isn’t already listed?

EN: If you want something that isn’t on there, you have to get a dietitian to put it on for you. For our local cream I got the data from Clover Stornetta, but I had to get the dietitian to add it.

GW: Do these changes persist in the database for other users?

EN: Once a food is entered by a dietitian it is supposed to go into the main food database for all users to see.  What dietitians cannot see is the caloric requirements/plans/food choices of patients they are not taking care of. The Mass General dietitian says this is because of health care privacy laws.

Extreme situations sometimes require extreme measures; what Fred and Evelyn do is not something anybody would try for themselves without the motivation provided by a crisis. Still, there are some interesting suggestions here that might be important for everybody interested in diet tracking to take note of:

First, there is a far richer set of data available about the foods we eat than is commonly accessed. I am curious about what other information about food composition is tracked by food manufacturers but not generally seen by the public.

Second, while the participation of dietitians is clearly useful for multiple reasons, it’s impossible not to wonder whether this utility balances the lack of access to the data for everybody else. The lack of a social dimension that would allow database changes made by one user to be at least considered by other users seems like an obvious failing in KetoCalculator, but this is simply another dimension of the bigger question of authority: a closed system can be vetted for the sake of safety and accuracy; but updating is much harder.

There are many, many different kinds of food. This is what we like about it. As Fred told me:

One of the hardest things to deal with is the variety. If you’ve got a 2 year old you can feed them the same thing day in and day out. If you’ve got a nine year old, no way.

Here is a short, somewhat arbitrary list based on quick browsing of some commonly praised food trackers that claim to have food composition data. There is a bit of an arms race out there for “biggest food database.” I don’t know how much these numbers matter. I post this for now just to invite comment: If you use any of these tools, and especially if you are tracking the composition of your foods, as opposed to just calories, please share your impressions.

1)Daily burn and Foodscanner both involve reading the barcode of a grocery item with your phone, and use data from manufacturers and USDA.

2) the dailyplate on Livestrong.com – claims a database of 1,158,600 food items but some users have complained that there is no way to add foods that are not in the database.

3) Lose it, is not known for a large database, but users seem to like its simple interface and a function that allows one to add unrecognized foods to a personal database. It is free.

4) Sparkspeople is also free and uses info from the USDA. It is formatted like a social networking site, creating an online community where users support and inspire each other.

5) DietPower,  a downloadable program that claims 121,000 foods in database, costs $50 a month.

6) MyFood Diary, claims 70,000 foods in database, and a good search engine. $59 a month.

Phone apps

3)MypersonalDiet, uses a 10,000 database with info from USDA database. (Windows mobile.)

4) Calorietracker, includes access to the dailyplate on Livestrong.com.

This entry was posted in News and Pointers and tagged , , . Bookmark the permalink.

2 Responses to QS Interview: Epilepsy’s Big Fat Miracle

  1. Dark Emeralds says:

    Makes me grateful that all I’m tracking are calories, and the basic protein-fat-carbs numbers. I thought weighing my food to the gram was accurate. Tenths of grams? Hard to imagine! But the results for the Vogelstein-Nussbaum family clearly merit the extra effort.

    I use MyPlate on Livestrong, and though it’s true that I can’t add specific food items myself (or if I can, I haven’t seen how), the existing database hasn’t failed me yet, and I can add recipes made up of base ingredients to get a per-serving value for foods I prepare at home (i.e., most of what I eat). It’s been a very significant quantifying tool for me.

  2. Pingback: Tweets that mention QS Interview: Epilepsy’s Big Fat Miracle | Quantified Self -- Topsy.com

Leave a Reply

Your email address will not be published. Required fields are marked *


*

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>

Notify me of followup comments via e-mail. You can also subscribe without commenting.