[This is a reproduction of an email update that I sent to family and friends on December 30, 2011. For more previous history, see Nora’s Epilepsy Story and previous posts tagged “Nora’s History.”]
Hi friends of Nora,
A quick update on how Nora is doing with her Modified Atkins Diet (MAD) for seizures, her “special diet” as she says.
First, we have to conclude that the diet is having a positive effect. We calculated average daily seizure counts for 4 “eras” of this 4 month adventure. When she was on a drug that we perceived as “not working,” she averaged about 12 seizures per day in each of those time periods. The minimum number during those times was around 5 per day, and maximums over 20.
In the “eras” when we felt like we were making progress (the Depokote “honeymoon” period and this recent trial on the diet), the average per day is around 5, minimum of 0 on some days, maximum under 20. That tells us that the diet is working, and they say that if the diet works in the beginning, it tends to keep on working. The frustrating part is that we have runs of 0 seizures for a few days, then they come back for a few days, then they go away again. We seem to be better about re-gaining our ground when she has seizures, but it is hard to tease out why the seizures return.
She is happy with her food choices for the most part. Her new favorite carb is baby carrots. Their high fiber offsets some of the delicious natural sugars. Toasted seaweed snacks are also a hit. I’m working on low-carb baking, which is also gluten-free baking by default. Today I went to Stoker’s VitaWorld and bought some whey protein isolate (which seems to be valued on par with gold), which seems popular for low-carb and gluten-free (and body builders). So we hope to have have a well-muscled, seizure-free child in a few months.
We are also learning just how many carbs her body will handle, how many calories she needs, and how to best deliver that food in a pleasing way while counting it accurately. Ted bought a fancy gram scale with a built-in database of basic foods, so we can quickly and easily see the content of her regular favorites, and get an accurate count of the amount of food that she is getting. It has been a real time saver and makes our carb counting much more accurate.
We find that she is doing best on less than 10 carbs per day, which really hasn’t been hard to do now that her tastes have changed (note that 120+ grams of carbs per day would be typical, and you get some perspective). Through trial and error, it seems that she doesn’t want to eat as much protein as expected by the dietician (50+ grams per day, while a kid her size would normally have 20 g per day), but it has not been a problem getting enough fat into her (130+ grams per day, thanks to warm cream and cocoa). She seems to be doing better when the ratio of fat to carbs+protein in her diet is closer to 3:1, which is closer to the more rigorous ketogenic diet. On the traditional Modified Atkins Diet, the initial ratio is 2:1 fats to carbs+protein, then 1:1 after the first month.
I had a great talk with the dietician about all of this today. Her first reaction was that Nora would be a good candidate for the more restrictive ketogenic diet, based on her response to the diet and our ability to keep track of her foods (most people on the MAD diet don’t keep such detailed records, apparently. Go data nerds!) On the other hand, I am reluctant to go to the ketogenic diet because it is highly managed by the dietician’s office and we are only allowed to use the foods in their database, it reduces my ability to concoct recipes, etc. And it makes each meal much more rigid while limiting her total calories and fluids. These are things to consider when we think about our family quality of life.
Therefore, the dietician and I decided on a trial of a middle ground. She gave me some carb, protein and fat targets that seem more realistic based on how Nora has been eating this last month on successful days (10 g carbs, 32 g protein, 125 g fat), and increases her fat to carbs+protein ratio to 3:1. I can still reach those goals in any way throughout the day, although I am mindful about spreading it out. If we have more consistent results with that plan, I hope that we can continue it without the full rigor of the ketogenic diet. I will further modify the Modified Atkins Diet.
I was relieved to hear that I could safely decrease her protein with this plan, because it has been hard to get enough meat into her; we have only met the protein goal a few days in the last month. This new plan should be more feasible. And interestingly, the keto diet is calorie-restricted because too much nutrition can actually mess with her ketogenic status and allow seizures to return! Sheesh! We are dealing with a finely-tuned machine here.
We will continue on this path until we see the ketogenic-expert doctor on January 12 in Portland.
Nora has generally been in good spirits and full of her usual verve. She has grown and gained 1 pound in 2 weeks. She spends most of her time “reading” these days, either by memorization or improvisation. Ted and the Lego guys have been very good sports about listening to her stories. She has been mastering many new words, including irk, dapper, and epilogue (which she maintains is what you say when someone sneezes. This has been the story for months now. Ted is often corrected.)
Anders continues to thrive. He has been a bottomless pit, mostly eating the same foods as Nora (except for the hot cocoa made from cream), and at least 5 apples per day.
It has been a luxury to all be home together during the winter break. We have had a babysitter on a few days, which has been wonderful too. Otherwise, we have been pretty contented home together. Only 3 more days left, then school and work resume and our adventure continues into 2012.