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.

It’s almost half way through the school year!

When things are going along fine but you know there are potential problems lurking, it’s hard to feel really at ease. You can’t really know that things will be fine until something goes wrong and you see how everyone handles it. We had our first real keto-problem at school yesterday. It was handled perfectly. We have a new kind of peace of mind about Nora at school.

We have been sending her “milk” in a small mason jar with a drink/pour lid. I’ve always been afraid that it will pop open and spill all over the lunch box, losing all of that necessary fat to make up her ratio. It didn’t spill yesterday–the jar broke! Nora opened her lunch box to cream and broken glass. Yikes.

The school called me, but I was teaching and my phone was off. They called Ted next, who was much more clever than I would have been. When I heard their message I was ready to jump on my bike and get new cream over there. Luckily I called the school back first and found out that it was taken care of.

When Ted got the call, he asked if they had any butter at the school. They did not (really? not part of a healthy school lunch, I guess). The secretary suggested that they have olive oil in the teacher’s break room, so Ted calculated that 2 teaspoons of olive oil would do the trick. Nora wasn’t happy about it, but she took it and no one had to leave work.

On a related note, we still have not made a formal 504 plan with the school. The nurse has not contacted me about it again, and in the rush of daily life I have not pushed it. It is comforting to know that her teacher (who was part of the chain of command) and the school staff were aware of her needs and worked with us to find a solution.

Nora also had her routine blood draw yesterday for Monday’s keto clinic appointment with Dr. Wray. Ted took her in when the lab opened at 7:30, so she was a little late to school. When she came into her classroom some of her friends came over to give her hugs and brought her to the rug where they were singing and dancing their morning songs. Ted left with a warm and happy feeling about Nora’s school. That’s another wonderful kind of peace of mind.

Many thanks and muchas gracias to the wonderful people of Garfield school who take care of Nora every day!

Just a quick update with a few keto notes that have been on my mind. Nora is 19 months + 2 days seizure free, getting over a nasty cold/flu and looking forward to Thanksgiving break from school.

Still no Cytra-K and Nora’s keto clinic appointment for last Friday had to be rescheduled because her doctor had a family emergency. We wish him the best and are looking forward to getting a new appointment.

Thanks to Ted’s creative parenting and Nora’s 5-year-old maturity, taking baking soda as a Cytra-K substitute is going smoothly. Ted mixes up 1 tsp of baking soda in about 1/2 cup of water. We give her up to an ounce with every meal and snack. On school days she has one at breakfast, then one with afternoon snack, dinner and anything left at bedtime. No more pukies for awhile, so it must be doing the trick and spreading it out over the day seems to help ease any tummy upset.

To convince her to take it, Ted played Mojo Jojo for several days, telling her that if she takes her baking soda she will have super powers like the PowerPuff Girls to defeat him, but if she doesn’t take it then he can take over the world (he was very convincing!) She gulped it down and attacked!

This morning as we were trying to get to school on time, she said “but I haven’t taken my baking soda yet!” and sipped it down all by herself. Although it will never be a yummy treat, it’s also not torture anymore. What a relief.

I also wanted to share some keto updates and success from other families. I cry when I read their history and their bumps in the road because I know what it is like, but I’m also so hopeful and proud to see them overcome. Good attitudes and stories are contagious. Even though I may never meet most of these families in person, I hope they know that we are out here pulling for them, and I know that they (and our readers) are pulling for us too. We are always stronger together.

• One of the first keto families that we connected with online is nearly weaned off the diet, after 5 long years of struggling with Doose syndrome and fighting for seizure control. I don’t have a blog post with the news, but I’m so thankful to keep up with Fawn on Facebook to get the news as it happens. Jade is out of ketosis! We are celebrating with you!
• Amazing KetoCook mom Dawn posted an update at long last. I had the honor of meeting Dawn at the Charlie Foundation conference over a year ago. She has done so much for keto parents everywhere, but her most important accomplishment is seeing beautiful Charlotte through Dravet syndrome every day and continuing to do everything possible to head off a seizure. We have learned so much from you and we are cheering you on always. Your family is an ongoing inspiration.
  
• And ketokid Autumn from Fort Wayne is in the news for 18 months of seizure freedom!

We have the deepest gratitude for the support we have received from everyone in our lives, near and far. Here’s to a restful and filling Thanksgiving holiday with our closest ones happy and healthy.

Nora started school this week! Our school district does a “gentle start” for kindergarten. We met with her teacher for a half-hour last week, when we got to talk to her directly about the diet and Nora’s needs. Then Nora went on Monday for a full day with half of the kids in her class. Today she is there for the first full day with the whole class and it’s the regular schedule from here on out.

We are happy that Nora is in a school for full-day kindergarten, which goes from 8:15 to 2:40. The kids eat 3 times in that span–breakfast, snack and lunch. Three times the meal packing every day. But we are so excited that it is a Spanish-immersion school, where she will be learning exclusively in Spanish every-other day or every-other week (depending on how the teacher decides it works best for this group). She is in a classroom with one bilingual teacher rather than switching teachers weekly. Nora loves language and has been trying to speak Spanish for a few years, with a convincing accent. I can now leave it to the teacher to give her real vocabulary.

Because there is so much involved with sending Nora to school and the story will be unfolding for the rest of the week and next, I am going to write several blog posts about different aspects of bringing keto to kindergarten.

For now, the only sure thing is our parental perspective. Every parent feels anxiety and excitement at sending their child off on the first day of school. My feelings tend to run toward pride and joy that they are growing up and entering their own worlds. Nora makes that feeling easy because she is eager to join in, with only a trace of shyness or anxiety at the new situation. I don’t have to leave her crying; she leads me right to her classroom and gets herself settled in. I feel fortunate for that.

But she has lived a sheltered keto-life. She was enrolled in preschool when her epilepsy was at its worst in 2011. We took her out of school and hired a nanny, our beloved Laura, to care for her at home when I was at work. Laura has been with her ever since. She has had a dedicated adult with her to open containers and scrape out dishes for all of this time. Now taking her to school means that she doesn’t have that kind of one-on-one supervision, which raises anxiety about whether she will eat all of her meals as prepared for her, while resisting any temptation to share food from other kids.

We are also retelling Nora’s story over and over again–to the school nurse, to the teacher, to other parents that we are meeting or don’t know well. I brought in the newspaper article about her 1-year seizure free anniversary because it’s an easy to read explanation and lends it legitimacy. And every time I say that she is doing so great now, we are feeling confident that she will continue to stay seizure free, I want to knock on wood or throw salt over my shoulder. Those feelings of anxiety are lessening as time goes on, but they are still there. Bringing her Diastat prescription to the office just in case she has a prolonged seizure is a prudent and necessary step, but brings up frightful images of seizures at school that I don’t want to see in my mind. For all of the hope of the last 20 months, there is still the fear of a relapse. Somehow we have to continue to hope for the best and prepare for the worst, which is front and center during this transition.

To cope with that anxiety, I have looked for strategies to make her meals as simple as possible and ease any social issues that she will feel. Even though the adults are supposed to watch out for her (more on that in another post), I would rather avoid the risks by making everything as independent for her as possible. Then she can also avoid a little of the stigma that may come from being “different” (more on that later too). Other kids will bring their own lunches too, so if Nora can sit down, open her own meal and eat it all herself, all the better.

I baked a lot over the last weekend to store up some easy high-ratio finger foods rather than relying on liquids like cream or oil to achieve her 3.5:1 ratio. We are trying not to include too many foods that require eating with a spoon so that there is not much left behind in the dishes. We are also trying to avoid anything that can spill easily, which would most likely be cream and critical to keeping her ratio where it should be (more on that later too).

All of this comes at a time of transition for everyone on our family. Anders is also back at school. Both kids are playing soccer this season, Ted and I both work at OSU and are preparing to teach again this fall. I was off all summer, so I was preparing Nora’s meals as we ate rather than preparing and packing the night before in a lunchbox. New routines means that everyone is a little off-kilter as we get busier, and everything is a little more rushed and a little more difficult.

Did you ever have one of THOSE keto-baking nights? I had one last night. Sometimes it is harder than usual. I was trying to make Nora’s pumpkin bars (which, if I have not raved about them yet, are at http://ketocook.com/2012/10/03/pumpkin-cheesecake-bars/). They have been a staple in the breakfast rotation for the last year and are so good. I always start measuring with eggs because I try to hit some multiple of the recipe based on getting the eggs to come out even. I hate storing and wasting eggs.

By my version of the recipe (altered a bit to get 3.5:1 for Nora), I cracked 3 eggs and came out pretty even at making 18 bars. That was a fairly reasonable number; next I went to the computer to calculate how much of the rest of the ingredients to add. Then I went to add the macadamia nuts. I keep some ground in the fridge for easy cooking, but of course I was almost out. Got out the food processor to grind more. Done with that. Measured a few more things…now my small jar of coconut oil was almost empty. Got out the 5-gallon jar to refill the small one. Always a messy job. Poured a glass of wine (I already did the math, so it was good timing). Finished measuring everything out and put it in the mixer. Went to help Nora out of the tub…came back 10 minutes later with the mixer still on–excellent, the bars will be well mixed. Measured them into individual silicone baking cups, so many that I had to bake them in shifts…then there is clean up. But for a night of baking, we have plenty of breakfasts ready to serve. Beats the morning rush.

Today and tonight we were strategizing about lunch packing, getting ready for tomorrow. It must be fall, for the evenings in front of the gram scale are here.