On Monday we made our way to Portland for another keto clinic check up with Dr. Wray. Nora continues to thrive. She is in her 20th month of seizure freedom! Her growth rate is right on track even after 2 years of diet therapy, 60th percentile for height and 75th for weight (I think she’s ready for a growth spurt). Dr. Wray reviewed her history and genetic testing and feels that there is no reason to keep her on a carb-restricted diet in the long term. Very good news.
Her labs were all fine. For those of you keeping score at home, her cholesterol panel was good at 188, triglycerides at 54, LDL (bad) minimally elevated at 135 and HDL (good) normal to good at 42. Her blood bicarb level was at 21, which is normally low but not too low.
We still can’t get Cytra-K in crystal form as before, so we will continue with baking soda (6 g dissolved in water given over the course of the day). She has avoided stomach upset after we learned to give small amounts of baking soda solution between meals. It seems to be a problem on an empty or full stomach. We have the option of using Cytra K oral solution (great cherry flavor!), but the stats I got from the dietician suggest that it has 3 g of carbs in her daily dose. We don’t think that’s a good trade off, when she could be getting 3 g of carbs through fruits and veggies. We will stick to the baking soda for as long as Nora tolerates it.
The biggest news is that we are going to adjust her diet to prepare for weaning her in April after her 2 years seizure-free. For the last 6 months she has been getting about 11 g carbs, 25-26 g protein and about 130 g of fat per day, which is 1300-1350 calories at a 3.5:1 ratio (fat to carb+protein).
That’s a small amount of carbs even by keto diet standards for this number of calories. When we increased her calories last time, the dietician suggested going up to about 16-17 g carbs, which felt like a big jump from 10 g of carbs, so we only increased it to 11 g at that time. Now we are going to keep the calories and ratio the same, but bring her carbs up to 16-17 g per day. That gives us a new daily target of 16-17 g carb, 20-21g protein, 128-133 g fat.
We will increase it by a gram every few days, so that she is up to 16 or 17 by the holiday break. Today she is up to 13 and is fine so far! When we told her that we were going to let her have more fruits and veggies she was so excited! It’s tiny baby steps to coming off the diet, but slow changes give us peace of mind. Slow but significant for Nora. Although she won’t do it all at once, going from 11 g to 16 g of carbs will feel pretty good!
I often get the question about “what does 1 g of carbs look like?” Of course, it depends on the food. It’s hard for me to answer on the fly because now I think in grams, not number of blueberries or baby carrots. Today I calculated one gram of carb for several of Nora’s regular foods. Some of them have significant fat and protein as well (so they are bigger servings), for those I listed their ratio too:
1 g of carbs in:
8 g blueberry
17 g macadamia nuts (5.43:1 ratio)
8 g apple
14 g carrot
11 g almonds (1.63:1 ratio)
46 g avocado (3.62:1 ratio)
15 g kalamata olives (4.5:1 ratio)
16 g strawberry (not pictured)
18 g raspberry (not pictured)
With 5 extra grams of carbs per day, Nora can have about 6 more baby carrots per day, or 40-50 small blueberries! That’s a lot!
Dr. Wray continues to be delighted by Nora, and to delight us. Anders joined us for the appointment because of a no-school snow day. Dr. Wray made a note of Anders presence in his follow-up report we received in the mail, and that is name is “pronounced with a soft A, which is the Norwegian articulation of his name.” See doc, we read these things with care. Anders thanks you.
Congratulations.
Our son’s total cholesterol and LDL are off the chart (LDL >300). He’s been on the KD since September. Do you all do anything different with Nora’s diet to keep her at such physician-pleasing lipid numbers? I’m shooting for LDL under 300. I’m not going to worry about getting to under 200.
Our keto clinic dietitian suggests subbing in more vegetable oils but because we’re doing this as an adjunctive cancer therapy, we want to minimize omega-6 fatty acids as much as possible. From your recipes it doesn’t seem like you guys do a lot of vegetable oils, so it looks like you’ve got a good thing going…
This is an excellent question, and I wish I could get a nutrition department/grad student to take Nora’s food diaries and break down her lipids to see if they can draw any conclusions.
Honestly, because it hasn’t been a problem, we don’t think too hard about it. But I’ll try to give you some general guidelines from our daily practices. I’m looking at yesterday’s meal breakdowns, and our daily grind means that she’s pretty close to these numbers every day. We always include the coconut oil because it’s easier for the body to break down and creates ketones more quickly, so we were originally added it when we were trying to stamp out the last seizures.
Out of her ~130 g fat per day, she gets
*15 g coconut oil
*9 g fish oil
*10 g from avocados or kalamata olives
*15-25 g from macadamia nuts (or other nuts)
*3 g from flax
*40 g from organic heavy cream, often more
*at least 5 g from organic butter, but it varies by meal
The rest from other food sources, such as eggs, cheese and meats.
This was so interesting it might deserve it’s own blog post. I’m curious how others do it too, or if other dietitians have recommendations. Are you familiar with the Charlie Foundation? I know they are unveiling a new website on Feb. 1, with lots of new info and KD for more than epilepsy, so maybe they will have more insights too.
For what it’s worth, I’ve also seen different perspectives on the cholesterol numbers. Some day that high cholesterol is a short-term issue because most people don’t do diet therapy forever and concerns about high cholesterol for adults don’t really apply to kids. I know some doctors and families try to control it, others tolerate it and keep focused on the purpose of the diet.
Thanks for this post, Christy. Our son Asa turned 2 on January 1st, and we are now almost 5 months into the Modified Atkins Diet to help control his infantile (now epileptic) spasms. He is still having about 2 seizures per week, but we feel the diet has offered other positive results: improved cognition, including a spike in his language ability (after qualifying as “speech delayed” in September), and a general brightness that perhaps wasn’t there before the diet. He remains on Keppra and Onfi. We are taking him to Johns Hopkins Second Opinion Clinic with Dr Kossof in two weeks to discuss modifications we might make to his diet. We are feeling that perhaps we need to increase the ratio … which makes me think, of course, of your “Modified Ketogenic Diet”. I see Nora gets around 130g of fat per day, right? Asa is only getting around 75-90g of fat per day (and no more than 10g net carbs), and we’re wondering if perhaps the fat intake could be the weak link. We’re wanting to modify the MAD before going full KD, so I’m thinking your MKD might be the ratio to aim for. We’re a little stumped at how to get more fat into him — it seems he gets so much already, in a wide variety of oils and foods — so if you have any daily meal logs for Nora that you’re willing to share, or other thoughts as we think of tweaking towards a MKD, we welcome those. Thanks for keeping this site going. Nora’s story really gives us hope! ~Dana, in Boone, NC
Thanks for your kind words Dana, and I’m so glad that Asa is doing well on Modified Atkins. We started out on MAD too and were so encouraged by the results, but didn’t get seizure freedom. Nora’s doctor says “higher ratio = higher dose” like medicine. So we started to get more strict, weighing foods and having certain targets, and got better results. Then when a breakthrough seizure happened, we upped the ratio a bit more, then a bit more again, until we got to 3.5:1, seizure free since then. So it’s pretty hard-core keto now, but still not exactly the traditional keto diet. We are right on the ratio for each meal, but we don’t do an exact breakdown of carbs and protein per meal, for example. We did this step-up approach rather than going all at once with hospitalized induction. I think the latest research says that it works fine to do it either way, and Dr. Kossof is the expert on the latest and greatest. It’s fantastic that you get to see him.
I know it seems impossible to add more fat, but seemingly small changes can squeeze more in there. I just wrote this out for another commenter a few days ago–a breakdown of her fat sources in a typical day:
Out of her ~130 g fat per day, she gets
*15 g coconut oil
*9 g fish oil
*10 g from avocados or kalamata olives
*15-25 g from macadamia nuts (or other nuts)
*3 g from flax
*40 g from organic heavy cream, often more
*at least 5 g from organic butter, but it varies by meal
The rest from other food sources, such as eggs, cheese and meats.
To increase the ratio, they will bring down the amount of protein he gets and replace it with fats. They will keep the same number of calories, so it’s actually going to be less fat than protein per gram replacement (because fat has 9 calories per gram, protein has 4 calories per gram). That’s why we need our dietitians and the ketocalculator! Nora’s dietician gives us the new breakdowns of carbs-protein-fat whenever we change calories or ratio.
Nora actually seemed to be a happier eater on keto than MAD. We could never stuff enough protein into her, even with the same number of calories. There will be other side effects to watch for as you increase the ratio, like blood acidosis and more constipation. We now keep track of Nora’s fiber intake too (around 11 g or more per day). She has not had a problem in ages.
We have a few posts that show some typical simple meals (http://blogs.oregonstate.edu/modifiedketogenicdietforepilepsy/2013/12/15/quick-keto-meals/ and http://blogs.oregonstate.edu/modifiedketogenicdietforepilepsy/2012/10/18/noras-top-15-foods/). We could do a few more of those posts or write up a few more. You will get a lot more help from a dietician making meals too, but always keep an eye on making meals that Asa will enjoy. No offense to dietitians, but sometimes the meals they might come up with are not what your kid wants to eat. I try to incorporate and hide fat as much as possible so there isn’t a big old mug of heavy cream to coax into a small child!
Please keep in touch and let us know how it goes!