Nora eats and eats. All by herself.

Last night at dinner I had a little revelation when Nora pushed away her plate and asked to leave the table–and her plate was empty!

One behavioral frustration with this diet has been hand-feeding Nora at almost every meal. She doesn’t fight it, but she has not eaten much on her own unless it is particularly appealing finger food. There have been many nights of sitting at the table talking with her while shoveling in the last bites (and it takes awhile, if you have ever experienced Nora in deep conversation. It’s hard to chew while so many words are coming out.) Or following her around the house with the last bites, or feeding her while she is in the bathtub.

Mostly I attributed it to the appetite-suppressing effects of the ketogenic diet. She is willing to eat, but doesn’t really feel like eating. We now also know that she was probably getting too many calories for weeks, so she was just full up. Now that her calories are reduced, she actually says “I’m hungry!” And thankfully, feeds herself.

A new food that is coming in vogue: celery! So juicy, crunchy and fiberous, it fills a girl up with almost no carbs (or protein, or fat). And Nora has now discovered pickles, a “sour power” treat with minimal carbs and lots of flavor.

And as we have not yet mentioned here, Nora ate a window gel cling thing (gummy bear-like consistency) this week. Chewed it right up. She had it in the car returning from a playdate with a friend. She kept trying to serve me “fish,” but I was driving and couldn’t see her. They are non-toxic and should pass right through, and Nora has not had any problems yet. But sheesh, like we needed that little moment of panic.

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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.

4 thoughts on “Nora eats and eats. All by herself.

  1. I’m soooooooooo elated to have been referred to your blog!! Nora is adorable! My son who is 5 yrs old, is on MAD. I’m so happy that I am not the only mommy that feeds her kid to make sure they actually eat. I just tell people that I don’t care if I feed him, as long as he eats and the diet his helping. He does a fine job at school on his own, but at home he is so busy to eat so I often times follow him around the house encouraging him to take a bite or bribing him w/ markers or cartoons if he eats!

  2. We are all in this together Holly! It’s been wonderful to connect with other parents like you.

    Nora has been eating everything by herself now (8 months after the post), so I hope to tell you that it’s a passing phase. I think she was getting too much protein on MAD too. Protein is filling. I think she’s happier on a higher ratio because even though the calories are the same, the volume of food is less (because fat has over twice as much calories per gram than protein and carbs). It’s trial and error to find the right fit for your kiddo.

    How is he doing on MAD? We found that everything just got better on a higher ratio–seizures, behavior, eating, etc. I think parents should weigh the pros and cons of each level of the diet and find the right balance for their kid. If MAD is working, hooray!

  3. We’ve had our ups and downs. In February Owen went 81 days seizure free, then its been a few here and there and then when he started school this fall, we lost all control. Nothing has changed other than school. So we are trying to slueth through some things and hopefully get back control. I know I could do a better job of pushing fat but reading your posts makes me wonder if he wouldn’t do better on a higher ratio, plus I could actually “see” that he was getting the right ratio. The drawback for me is I work 8-5 and I’m not great a thinking ahead for meal planning. Maybe if I did mass cooking on the weekend and froze meals?
    Owen also has CP and several developmental delays. We did see a HUGE improvement in his behavior after we cut gluten or any low-carb products containing gluten. In fact that is when we saw the 81 days w/o a seizure.
    Owen has Drop seizures, myoclonic and abscence seizures and is on Depakote sprinkles and Banzel. He’s only had a few abscence seizure since starting the diet, 1-2 myoclonic, its the dang drop seizures we can’t get a hold of. 🙁
    There are days I feel defeated and days I just feel I don’t do a great job, but when I think back……this change in diet has done WONDERS for him overall. That is what keeps me going.
    Your blog is very refreshing and I’m taking away some great ideas. I just bought a mini-donut pan on my lunch hour and going to attempt to make MAD friendly donuts. Wish me luck!!!

    • Always good luck! And a lot of it is luck. But we’ve learned to control as much as we can and take a deep breath when things get out of our control.

      I don’t think I put in more time doing the keto diet vs. when Nora was on MAD. But we did MAD in a fairly strict way at the beginning so that we knew that we were giving her the right break downs. I was keeping track of carbs/protein/fat every day in my estimated meals (like 1/4 avocado, you know?) So by going to keto we added the gram scale and moved the targets for carbs/protein/fat to get the right ratio. And we get to the right ratio per meal instead of by the end of the day. We totally noticed that on days when she got a lot of her carbs early, she would start having myos in the afternoon and they would take a few days to go away. The meal-by-meal ratio helped her.

      I have a post “Efficiency is Life,” and it’s true of all things keto. I do a lot of things in batches and ahead of time so that it’s ready to pull out of the fridge to make a meal. We have a small arsenal of foods in the fridge at all times to mix and match to make a meal. I’m not rigid about having “meals” ready, but having foods ready that can be balanced into a meal. Having a few at-ratio items on hand is wonderful too for when you really need something quick. I’ve got a few posts in my head summing up our daily routine and Nora’s current top-10 foods for more insights. I just need the time to blog! I work too and we have a busy 7 year old son, so we are always on the fly. But once the routine is down, it all gets easier. Then it’s just tedious and relentless, not hard. Having a kid with seizures is much harder.

      We are also wondering about gluten right now because on Friday I noticed that Nora has been gluten-free for weeks, just from the normal foods that she eats. Then 2 days ago she had some low-carb tortilla that’s ok for the diet, and the next morning she has a rash on her face. We are going to try an elimination diet approach with gluten and see if that pattern repeats. Very good to know.

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