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.

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This entry was posted in Nora's History, Tips and Tricks by Christy Anderson Brekken. Bookmark the permalink.

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.

2 thoughts on “We press on

  1. Hi there, thanks for sharing such a great blog, it’s really helped us get through some tough times the last few months!
    My son has been on a 3.5:1 ratio for the past month and a half. We haven’t A SINGLE seizure since his ratio increased, but we have seen more and more constipation. Our keto team (at the Children’s hospital in Denver), makes it sound so easy — just drink water — however, our son (who has autism and is also extremely picky/stubborn) has other other ideas. I feel like we’ve tried everything! Do you have a particular post or any resources to help us manage this situation? Thanks!

    • Hi Kaitlin, congratulations on over a month seizure free! Whoo hoo!

      I don’t remember a particular post about water, although it was definitely something that we had to pay attention to also. I’m just thinking of ideas off the top of my head to try out.

      Nora really liked Raspberry Zinger Tea (Celestrial Seasonings), and they have many other fruit flavors that are decaf and have no actual tea or other medicinal herbs, no carbs, etc. Tea with a touch of stevia or cream, if he likes those, could be an way to offer a “special” drink. Iced or warm, either way works.

      Popsicles made with a no-carb flavored drink were also a hit, especially at the beginning when she would just want to have a treat or something but it wasn’t time for a meal yet. Those can also be made with a fruit tea and a splash of cream or coconut milk for a little fat supplement if necessary.

      We also did a lot of bribing with special dishes, like letting her pick out a cute cup, spatula, plate, or something when we were in the grocery store instead of treat food. A fun special waterbottle perhaps?

      You could also do more soups or meals that require some liquid, just to increase the liquid intake overall.

      Those are some ideas–hopefully they are something new even though you tried everything! Nora also took Miralax daily, if they haven’t recommended it you might ask about it.

      Keep up the good work!

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