Nora Update

Seizures per day before the diet:  18
Seizures per day now:  0.2
Reduction:  99%
Half-life:  14.9 days

Daily seizure counts with model.

The big news this week is Nora having seizures again.  She started the week with a bang with a tonic-clonic seizure early Sunday (Feb. 26) morning.  Since then she has been having 3-5 myoclonic seizures per day, with a few more while sleeping.

The big question is “why?”  Here are some possible reasons:

  • Something biologically has changed with Nora; her seizure threshold went lower, despite being on the diet.
  • The revenge of the window-cling she ate a week and a half ago.
  • Perhaps we made large mistakes estimating her carb/protein/fat intake when eating lunch at the grocery store last week.
  • A bad reaction to a new brownie recipe Nora had last week.  The brownies would have given Nora more cocoa, caffeine, and Stevia than normal.
  • The introduction of pickles, celery, and some new creamy cheeses to her diet.
  • Constipation.
  • Cinnamon.  Some people (Atkins dieters) seem to think cinnamon can mess with ketosis.
  • Nora ate something we didn’t see.

Whatever happened, her level of ketosis has been affected.  The morning ketone reading, which is usually the one that is the lowest, has been between 40 and 80, which is probably too low.  Her afternoon and evening readings continue to be 160, which is good.  It actually gives me a good deal of comfort to see the low morning ketone reading because it indicates that it is likely something has disrupted her ketosis, as opposed to something more fundamental causing the diet to stop giving total seizure control.

The next question is then how long it will take to get her back into a keto groove.  Looking back at the ups and downs through December and January, it appears to take something like 7-10 days to halt the increase in myoclonics and drive them back down.  We are currently on day 5 of the return of this little batch of myoclonics, so I think we need to be patient for a few more days.

Another interesting observation is that Nora has been really craving carbs.  She has been asking for toast and bread, and literally dreaming about cookies.  This also indicates that something has awoken that part of her metabolism, and that could be interfering with her ketosis.

Seizure counts with dietary metrics

Here you can see we have decreased her carb intake slightly and pushed her ratio higher to try and get back into ketosis and seizure control.

Analysis aside, it has been very frustrating and discouraging to see some seizure activity return.  Especially after the smash success of mid-Jan. through mid-Feb.  Nora seems no worse for the wear, thankfully.  I think all indications are that we are still headed in the right overall direction and that we can get a good amount of control back soon.  But epilepsy is unpredictable, and no one knows what Nora’s brain will do next.  Any words of wisdom and encouragement are welcome.

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