I spoke too soon…

[Insert your worst curse word(s) here. Responses will vary.]

Nora had more myoclonic seizures today, 5 total. It was hard to see them come back. They were clustered in the afternoon and she had none in the evening, so I’m hoping that we are regaining ground. I took another keto reading this evening, and she is in hard ketosis (160+). Whatever happened to our seizure control, please let us find it again quickly. Ted pointed out that yesterday’s lower reading in the morning was probably too low. We had not monitored it for awhile, but the last time we were consistently checking she was also in hard ketosis in the mornings.

We have read similar stories of setbacks by other parents, so we know that it can slip away mysteriously sometimes and take time to get seizure control back, and that it is entirely possible. It is hard to have a setback, but it will happen and we keep moving forward.

Ted is wondering about the recent addition of pickles, but I still have my stink-eye on the brownies. This morning as Nora was waking up, she was talking in her sleep: “Give me my cookies back! I want my cookies!” When she woke up she told me, “I want something, but you will be mad.” I assured her that I wouldn’t be mad, so she told me what she wants, “a really delicious sweet to eat treat.”And I was not mad.

Of course, it is entirely likely that the loss of seizure control and her desire for sweet foods is coincidental. But if she had a blood-sugar-like response to the brownies (both no-carb stevia sweet and caffeine), then maybe her body’s glucose-energy system kicked in again: her pancreas released insulin to unlock the sugars and were bopping around telling her to eat some damn sugar. No one knows how exactly the diet works, but if it works by suppressing the whole glucose-for-energy system and its hormones, and her system was re-awakened, maybe that explains the loss of seizure control.

My theories are not entirely made up (only the connection to seizures part): “The tongue recognizes ‘sweet’ flavors as sugars or carbohydrates, and it signals the body to start producing insulin to help regulate blood sugar levels. Well, when we drink diet soda, there is sweet flavor but no actual sugar going into the system, so our bodies now crave sugar as our blood sugar levels have become unstable. This brings on food cravings and sugar cravings in particular. For this reason, diet soda also causes diabetes and pre-diabetic conditions. Awesome.” From Diet Soda Makes You Fat.

Wow, better get out of my armchair. That’s too much biochem doctoring for me tonight. I feel like I need a disclaimer here–and if anyone else has a better idea, I’d love to hear it.


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About Christy Anderson Brekken

In no particular order... Instructor and Researcher, Department of Applied Economics, Oregon State University. Educational background: University of MN Law School, 2005. MS in Ag and Resource Economics, Oregon State University, 2011. Teaches: Agricultural Law, Environmental Law. Mother: brilliant 9 year old boy; brilliant 6 year old girl with benign myoclonic epilepsy on a modified ketogenic diet therapy. Married to: Ted Brekken, OSU Department of Electrical Engineering. Ride: Xtra-cycle Edgerunner with kid seat; 400-pound cargo capacity. Grew up: Devils Lake, ND. Lived in: Minneapolis/St. Paul, MN, Pohang, South Korea, Trondheim, Norway, Corvallis, OR. Interests: Cooking, knitting, eating, yoga, laughing, hiking, traveling, staying sane.

One thought on “I spoke too soon…

  1. FYI: I’m very suspicious of stevia myself. Although I didn’t experience any immediate allergic reactions, after using it for months, I started experiencing simple partial seizures (no prior history of seizures). I believe my chronic consumption of stevia had a cumulative effect over months that caused these events.

    After much research and consulting with a neurologist, I then consulted an endocrinologist. It lead me to the insight that stevia might be the underlying cause. I stopped consuming stevia and the seizures stopped. I’m keeping my fingers crossed there will be no recurrence. When I hit the 6 month mark seizure free, I will be posting my experience to other forums.

    Please consider nixing the stevia.

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