November 21, 2009

Video of Bertrand on the 5th day of the ketogenic diet

Bertrand being seize-y at his best friend's fun birthday party today. :(

I was torn on whether I should post this video, or anything for that matter, today. Not even a week into the ketogenic diet and we already experienced a keto slip-up. Unfortunately, this means Bertrand had his first atonic (two of them--we call them "drops") seizures since starting the diet today. He also had countless myoclonus (we call them "startles" because his head, arms and legs all jerk at the same time)--he'd had 20 by 9am.

This experience was valuable to us for several reasons. It emphasized:
  • The importance of vigilance when your child is on the ketogenic diet.
  • The extreme effect even the smallest amount of carbohydrate can make.
  • The delay in urine ketone readings versus actual blood ketone levels.
  • And, more positively, the fact that the ketogenic diet is working for Bertrand!
What happened? Yesterday, we found out that Nutricia botched the shipping of our KetoCal order, so in the evening we switched to mad-dash, homemade keto eggnog. Everything seemed to be fine. Then this morning Bertrand was pretty much back to his old self: seizing and irritable. His ketone strip showed moderate to large ketones. After a breakfast of eggnog, he had the first drop since starting the diet and about 20 startles. We knew something was wrong!

The only new thing we had introduced was the eggnog. A fresh ketone check confirmed that his ketones were down to moderate. We were able to isolate the stevia liquid sweetener and the pure vanilla extract as the likely culprits, and sure enough, the "pure" vanilla extract was not so pure. It contained sugar and alcohol. (I won't be using the stevia either though!) I'd been planning to buy a set of keto-safe Bickford Flavors for Bertrand when I began to prepare meals other than KetoCal for him, but I hadn't planned on that being so soon!

Even though this video doesn't show an improvement in Bertrand, I feel that it is important. There are so many stories out there of seemingly overnight recoveries on the ketogenic diet, when the reality is probably far closer to the troubleshooting session we just experienced. I have every confidence that Bertrand will be back on the keto-wagon by tomorrow and we are better parents for this today. So, without further ado, here is the video of Bertrand recovering ketosis.

4 comments :

  1. Poor little guy; you are both doing such a great job, though. I'm glad that it shows that the diet is making a difference for him. We'll get another photo of them together on Bertrand's birthday - when he's feeling much better.

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  2. Hey, nobody expects perfection. I'm so glad that the diet is making such a difference overall.

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  3. Now you know. I think this keto diet, like everything else with our kids, is an untravelled learning experience. Honestly, I think it is pretty dang impressive that you figured it out so quickly!

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  4. Way to go on the sleuthing, Cristina. There will be bumps and hiccups along the way, for sure, and you'll always need to be adjusting as Bertrand grows and develops, but the important thing is that the overall trend is UP!

    Our dietitian recommends using only powdered stevia because it's pure stevia. You need such a TINY amount to sweeten things. When I first bought it I tried a little wee bit from the tip of my finger and was floored at how sweet it was!

    Most vanillas have at least some alcohol in them -- I've never found any that doesn't. (But mine doesn't have any sugar.) I think even the Bickford's has a bit of alcohol. We were told to use only a few drops per meal and that has always been fine. Go slowly when you introduce the flavours, even though they are "keto safe". If you only try one new thing at a time, it'll be easier to pinpoint what's happening if there's an adverse effect.

    I'm probably not telling you anything you don't already know, though. ;)

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