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.