ketogenic diet

As noted in earlier posts, we recently started Evelyn on the Ketogenic Diet. This diet is (yet another) treatment to try and reduce seizures.

At this point, we've worked our way through about.... 7 different medications (phenobarbital, fosphenytoin, Topamax, Klonopin, Depakene, Keppra, Zonegran), without significant impact on Evelyn's seizures. These are largely the more benign medicines with respect to side effects. As those haven't worked, before we go on to the "less benign" medications, we're giving "the diet" a shot.

It's essentially the Atkins diet on a whole different level - low-carb/high-fat/high-protein to the extreme. It's so low-carb that we even had to replace our baby wipes with ones that specifically did not contain glucose, and ditto for any other commonly-used "baby product" (lip balm, lotion, soap - you name it).

Anyway, the theory is it puts your body into ketosis (just like the Atkins diet), which causes your body to produce ketones. The theory (as I best understand it, and may be incorrect) is that these ketones bind with amino acids in the brain when the brain begins using them for energy (in place of glucose), and... does something to the chemical makeup of the brain that reduces seizures in about 50% of people, with about 30% of people showing a 90% reduction or more.

Part of what we have to keep track of is Evelyn's ketone levels, to assure they're not too much, and not too little. These are measured through a urine test.

Now, if you stop & recall that Evelyn is 5 months old, you may be asking yourself, "How in the world do you collect a urine sample from a baby?!?!?" ;-) Well, we're happy to report it doesn't actually involve holding Evelyn over a cup for hours on end (as was the initial picture we had in our heads!). We just slap a small cotton makeup-remover pad in her diaper, and squeeze the resultant output a few hours later onto a test strip. So, if you've ever wondered how to test the urine of your 5-month-old - there ya go. Aaaah, but one of the many things we never thought we'd know. ;-)

At any rate, as Evelyn's a baby, the diet's actually easier (hah) to maintain, as for her, it's just a special formula; KetoCal. For older kids, you can imagine that it gets much more difficult to find "regular food" that meets the fat & protein needs of the diet.

As of this writing, Evelyn's been on the diet for right at a week. She's just now hitting the full level of ketones. With any luck, we should be seeing results (if they're going to be seen) within a few weeks, or maybe a month or two. And if so, we can begin ramping down some of her other current meds, which would be nice. But, as with everything Aicardi... Time will tell!

Generally-speaking, we're all doing pretty good. Evelyn's seizures are still running anywhere from 30-50 a day (again; typically 30s each), and we have been seeing some new types of seizures - but she's been much more alert, overall, which has been nice.

Anyhow - that's it for now - more later! :-)

600 grams

This is an amusing ... story; anecdote; something I thought y'all would appreciate. ;-)

So, we're starting the ketogenic diet with Evelyn. I'll detail that in a separate post. Particularly because she's a baby, we have to be very precise in how much food (a special formula - KetoCal) we give her on the diet, as it's a delicate balance of ketosis to be maintained, plus we don't want her to actually lose weight. Thus, a precise scale was recommended by the dietitian; one that can measure in tenths (0.1) of a gram.

While these can be procured online, brick-and-mortar stores carrying them are harder to find. We didn't want to wait for a shipment, as we wanted to go ahead & get things going. Moreover, Kim wanted a smaller-sized scale - e.g. easily portable or what-not - so if we had to feed Evie "on the road" - it could be done. So, I was tasked with procuring one from one of few the stores known to carry very precise scales (and recommended for this reason by the dietitian!) - a "Department Store" which shall remain nameless. I couldn't even find a website for them, but they're a local chain here in Phoenix, as best I can tell. And they're not your "usual" department store - no lady's and housewares (though there might've been a jewelry section!). They are a ... "pipe store". Or "smoke shop". Or "counter-cultural and related paraphenalia store".

For those not catching the drift, it is a store which sells drug-related paraphernalia. Bongs. Incense. "Cigarette" rolling paper. And, yes - very precise scales. In the event you wanted to weigh something "small and expensive" in precise quantities. Like KetoCal! ;-)

So, I walk in on my lunch break (e.g. dressed for work), and was immediately on sensory overload between the burning incense, giant wall o' bongs, tye-dye everywhere and the Dead playing not-so-softly in the background. So I asked to be directed to the scales, to which I was gladly pointed. I ask the kind "salesman" for help in choosing a scale that was precise to the tenth of a gram, was reasonably small, but also wasn't too pricey. He recommended a few models, but then he posed a question (or a point) that we hadn't considered: How much weight would we need to weigh? E.g. what was the upper-limit of the scale?

To complicate things, because it was all quite precise, we're going to be mixing Evelyn's food up all at once. So, we're talking about a whole day's worth of food, not a single feeding's worth. The model otherwise seeming to most meet our needs only went up to 600 grams. I had no idea what 600 grams looked like or felt like; I'm not a metric guy! ;-) The "salesman" pulled out some calibration weights, in 200 gram increments. This helped a little, but was deceiving, since they're quite dense, as compared to the KetoCal formula.

While I was pondering this and calling Kim to ask how much food we'd have to weigh at once for Evie, my first "salesman" got preoccupied with another fine & upstanding customer. I got off the phone with Kim, and was still pondering the scale, when another "salesman" walked up. Now, I hate to call anybody a dirty hippie, because I know plenty of good, upstanding & most importantly clean hippie-types, but... this guy was a dirty hippie; dread-locked & just... dirty (literally). ;-) I labor at all this description only so you'll fully appreciate the hippie "dude" expression, said as only a hippie can say it.

He sees me really quite consternated over this scale, so I explain that "I'm just not sure if I'll need to measure more than 600 grams or not."

Him: "DUDE - it's 600 GRAMS!" [as if to say, "unless you're starting your own cartel - that's plenty, man!"]

Me: "Oh, yeah... well... I'm not trying to measure what you guys... normally might measure with this."

Him: [look on his face of "yeah-if-I-only-had-a-dollar-for-every-yuppie-looking- white-boy-that-comes-in-here-looking-for-a-scale-that-measures-to-the- tenth-of-a-gram-that-will-fit-in-his-pocket-that-wants-to-weigh-'other stuff'-with it"]

Me: [ignores look] "Yeah; I'm trying to measure food with it."

Him: [look of "Yeah.... 'food'... whatever helps you sleep at night, buddy"]

[awkward pause]

Him: [finally asks, gesturing with his hands an approximate size] "So... like... how much are you trying to measure?"

Me: "Well, it's baby formula - so it's ...." [I stop short as I realize I'm about to describe it as "a fine white powder"] "...well, see, my 4-month-old daughter has a seizure disorder. So there's this special diet that she has to go on, but we have to be very precise with how much she gets, as it's a delicate balance of the diet controlling the seizures and keeping her from losing weight. See, the diet puts your body into ketosis - just like the Atkins diet - which produces amino acids which bind with certain proteins in the brain, which - in about 30-50% of the general population with seizures - helps control seizures."

Him: [look of "oh-wow-either-that's-cool-or-this-guy-really- put-some-effort-into-coming-up-with-his-excuse"] "Wow... so it, like, stops the seizures?"

Me: "Yep; about 30-50% of time."

Him: "Cool, man... cooool."

So, long story short, we are now the proud owners of our Jennings JS-600V pocket-sized ultra-precise scale for measuring out our expensive fine white powder.

And that's the honest truth, Your Honor. ;-)