And now it’s December…

About 1 year ago now Nora first entered ketosis. Oh, those were a first few bad days. She would lie on the floor moaning for toast. I thought that she might chain herself to the refrigerator until we gave her toast and jam. But we survived a long difficult weekend and came out the other side, to ketosis and the first glimmer of Nora getting better after 3 months of myoclonic seizures.

Now she has been seizure-free for over 7 months. Her seizures did not stop right away. We eased into diet therapy by starting with the Modified Atkins Diet, tightening the ratio and spreading her carbs more evenly through the day because we notice that it helped. On Christmas Day last year we had been having success for several days, but decided to celebrate by giving Nora 1/4 piece of toast as some of her carbs for the day. By the afternoon, she was having myoclonics again. So we learned to feed her a more traditional keto diet by trial and error, while consulting with her dietician. After tightening up the diet her myoclonics stopped, but she had a few more early morning tonic-clonics every month or two. After the last one in April 2012 we tightened her ratio to 3.5:1 and she has been seizure-free ever since. What a relief.

Nora has been great lately. We haven’t posted much because life has been busy and we’ve been chugging along with the daily routine. This is a case of “no news is good news.” Nora has been happy with her same-old recipes for the most part. I had done a lot of baking before our quarter started at OSU, so we had plenty of food in the freezer to make it through these busy weeks. I’ve done a bit of baking since then, but the recipes are waiting for another try before I post anything new. On top of it, a recipe for a flaxmeal-based bread fried my hand mixer (there was smoke), so that recipe will have to await new technology at our house! ┬áNora loved the bread and got to have some PBJ sandwiches, so I hope I can make it again and post the recipe soon.

Our one bit of news is that the kids were both sick about 1 week ago. Nora threw up once before bedtime after complaining of a stomach ache, but she was keeping down all of her Cytra so we didn’t feel that we needed to call the doctor. The next day we reduced her calories and fed her as simply as possible while maintaining her ratio and Cytra rations, but thankfully she kept everything down and felt better. A minor illness was nothing more than a few days of watchfulness and worry, but I felt more at ease because I had just created our illness preparedness plan!

For Thanksgiving dinner I made Nora smashed celery root with cream, cranberry sauce, stuffing made from her most recent flax bread, and chicken. She complained about the whole meal and we had to spoon it into her. I just had to attribute it to the pickiness of a 4-year-old. She had her Keto-Perfect-Cheesecake for dessert, so all’s well that ends well.

Now that our quarter at OSU is over, we are getting ready for the holiday season. I’m going to make some of the cookie recipes from Dawn and Tiffany at ketocook.com as the new treats for this month. I may stick with those tried-and-true recipes, but if I come up with anything new and interesting you will find it here.

Now that we are 1 year into the diet, we can look back at our ups and downs. We can be grateful that we have come this far, and the year ahead doesn’t look so uncertain and daunting. We are finally starting to believe this is really working in the long term, although there will always be a bit of uncertainty about Nora’s seizure threshold. I’m sure that will always be with us. But most of all we are so very grateful to be here with hope for the coming year. Being in the groove never felt so good.

 

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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.

3 thoughts on “And now it’s December…

  1. congrats on a year of ketosis! it’ll never be fun, but it’s become our new normal in so many ways. I’m thankful for the success you’ve had and pray for continued success all around.

  2. I just wanted to say how much I admire your creativity with this site. My daughter has also been on ketogenic diet sense march 2012 . We’ve been thought a roller coaster to finally get to this happy medium with my daughters health. Reading your story seems like looking in a mirror. We have a lot of similarities with our daughters. I got your blog from our Neurologist . Would love to connect more but am having trouble subscribing to your site. Let me know if there might be something I’m missing.
    Thanks
    Sara

    • Thanks Sara. We would love to compare notes if our daughters have a similar story. Nora’s epilepsy is a mystery to the doctors, so getting people with similar stories together could shed some light on the underlying mechanisms that are going on and help others too.

      Have you tried the Blogtrttr subscription service and confirmed the subscription? And did you do that in the last few weeks? Because I have not created a new post since Jan. 27, so if you have subscribed in that time you would not have received an update yet. If that is the case, then wait for a few more days and see if you get an email with a new post. Nora goes to the doctor tomorrow for her ketoclinic check-up, so I will be posted an updated sometime after the appointment.

      Best to you and your daughter, Christy

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