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.