We press on

Nora is still having a few myoclonic seizures a day, 10 days after we lost seizure control. It is frustrating because we have been checking and re-checking and following the diet to the letter. We have not been able to regain the hard ketosis that worked so well before. On top of it, she seems quite constipated, which is a known seizure trigger.

I spoke with her dietician today. We talked through the situation and decided on a plan of action. And I was reassured that we should plan to suffer through another week. If it breaks sooner, we shall rejoice.

On the issue of regaining ketosis, she suggested that we add coconut oil into Nora’s diet, a medium-chain triglyceride. This kind of fat is much easier for the body to convert into ketones and can help strengthen the keto response more quickly than long-chain fats. As a happy side effect, it is also a mild laxative. We will be adding 5 g of coconut oil, 3 times per day. I had made some peanut butter coconut oil cookies a month ago and froze some, so I took them out today and Nora was a happy camper and she got at least 4.5 g of coconut oil to boot. If they work out this week, I will post the recipe.

Yesterday Ted went on a fiber crusade for the constipation, but fiber only works if she drinks enough fluid to move it through. The dietician said that the fiber rule-of-thumb for kids is her age plus 5, so Nora should get 8-9 grams of fiber. She has already been pretty close to that number on a daily basis because she gets lots of flax, carrots and red peppers in her diet, so we will keep on top of that number too.

We’ve also been reading about a protein called carnitine that is required to get long-chain fats into the mitochondria to be converted to energy (but medium-chain fats do not need this protein to move in, which makes them easier to convert, hence the coconut oil). In ketosis, this protein can be depleted because so much fat is being synthesized. The medical community is not clear on whether ketogenic diet and/or Depokote users need carnitine supplements: some prescribe it as a matter of course, others will not prescribe it unless carnitine levels are measurably low (which is the view taken by Nora’s doctor). For now, we will leave that on the table and consider trying a supplement if the coconut oil and time do not resolve the issue soon.

We will go up to Portland to the keto-clinic to meet with Nora’s doctor and dietician at the end of the month. I’m sure that they will check all of her blood levels also. As a side benefit, it seems that a trip to the doctor always magically resolves all issues. Two weeks is just the right amount of time to fix it all up.

As to why this happened, we will remain in the dark. The dietician said that seemingly small changes can make a big difference–like getting too many calories and having new brownies in the same day. Or it could be something internal to Nora–a growth spurt or development phase. Whatever the cause, it is common to take several weeks to get control back, so we will continue on the path.

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.