December 8, 2009

An Update & Experiment Gone Right

Bertrand has fully entered the fine tuning stage of the ketogenic diet. We are pretty sure that he is medically safe going into week 4. He is no longer sick or dehydrated and his glucose test from yesterday was great at 71 (normal range 60-180 but for the diet >40 is considered good).

The first few weeks on the diet brought a big reduction in the number of his startles (myoclonus) and the elimination of his drop (atonic) seizures. Then over the past few days his startles started increasing, the drops returned with a vengence, and I was heartsick watching my baby turn back into a staring little vegetable.

What changed? Nothing except Bertrand got well and his appetite returned. For the first time since he'd started the diet, Bertrand was getting his full fluid and calorie allotment. While I am quite happy that Bertrand is getting his fluids (his urine before was a little too yellow in my opinion), I think his dietitian may have overestimated Bertrand's calorie requirement. I've been participating in a ketogenic diet support group online, and there are bigger, heavier, more active four-year olds on the diet with lower calorie allowances than Bertrand!

I've also been keeping a very detailed log of Bertrand's daily intake and activities. All of his drops seizures happen within 15 minutes of drinking his KetoCal shake. And yesterday was the straw that broke the camel's back. Bertrand had 5 drops and 12 startles! This was as bad as the first day on the diet! (How quickly I got spoiled. I would've killed for seizure numbers like that once upon a time and now they are too high. I guess that's the miracle of the ketogenic diet!)

Today I went renegade and dropped Bertrand's calories to 950--almost 200 calories lower than what his dietitian prescribed. While his ketones still read as only moderate, he had only 1 startle and 1 drop all day! And, they both took place in the morning! For myoclonus (startles), this is the best we've seen since starting the diet! He was also more alert! My greatest hope is that we get Bertrand's very first myoclonus and atonic free day tomorrow--for his birthday!!!

PS - Turns out that my cold which won't go away is strep throat. I started a course of antibiotics today and am already starting to feel more human! Woo hoo! :)

7 comments :

  1. That's great, Cristina! I'm sorry you have such a crappy dietitian (oops, did I say that?) because I found ours so invaluable at the beginning. However, since you're sticking pretty much just to Ketocal and eggnog, you won't have to ask 75% of the 2000 questions I sent out in the first few weeks! I was a recipe-creating machine for many months, let me tell you!

    Happy birthday, handsome boy!! I hope tomorrow is a wonderful drop-and-startle-free day!!!

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  2. This is great! Bertrand is adjusting to the diet. I hope this will continue and today, 12/9, B's 2nd birthday is a beautiful day for you all!
    My love
    Titi Lili

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  3. Happy Birthday Bertrand!!! Have a great day filled with so much love from your friends/family.

    Luv,
    Nicole and Samantha

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  4. Happy birthday, Bertrand! I wish we could be there to see your progress in person, but we've dropped you a card which should be there in a few days :). Daniel and Veronica both like seeing his videos, especially the old one of him riding a horse, and they enjoyed helping to pick the card.

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  5. Hooray for the beautiful determination of smart, fierce mamas.

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