We traveled to Portland yesterday, fighting the morning traffic for Nora’s keto clinic appointment. Nora continues to thrive and we delight in Dr. Wray’s obvious delight in her continued good health and seizure freedom. He ran her through the clinical neurological tests and we talked about lab numbers and other questions. Audrey, her dietician, said that Nora has one of the most beautiful growth charts of all of her keto kids. Knuckles all around! By the way, knuckles are the new handshake if you want to avoid illness this winter. Now you are in the know–pass it on.
It’s been a little while since we have given an update here, so I will catch you up. We continue to wean Nora from the keto diet a bit at a time. Better yet, she is still seizure free, 29 months running. Since the previous post, we brought her down to 2.25:1 for 3 weeks, then 2:1 for another 3 weeks. That was the last step in her wean plan before this keto clinic appointment. Yesterday we got the next steps in the plan, which I have scheduled at 3 to 4 week intervals:
9/17-10/11: 1.75:1 ratio, 120 g fat, 33 g protein, 35 g carbs
10/12-11/1: 1.5:1 ratio, 116 g fat, 42 g protein, 35 g carbs
11/2-11/22: 1.25:1 ratio, 111 g fat, 50 g protein, 38 g carbs
11/23-12/13: 1:1 ratio, 104 g fat, 65 g protein, 38 g carbs OR 104 g fat, 50 g protein, 54 g carbs OR somewhere in between (explanation below)
After 12/14: 1:1 ratio via Modified Atkins Diet (MAD); unlimited protein, approximating meals instead of weighing to the gram.
The plan was always to move to MAD, but seeing what that means for Nora became more interesting based on our current wean trajectory. The first weaning steps had her protein increasing to get her up to the recommended daily intake of protein for a child her size, which is around 26 g of protein per day. After she hit that target, each wean step increased her carbs and decreased her fat, keeping total calories the same. At 2:1, she was getting 35 g of carbs each day. As we continue the wean, you will see above that the protein is coming up again, while the carbs stay the same for awhile. Then when we hit the target of 1:1 we have some options for the mix of carbs and protein.
The interesting part: if a kid is on the Modified Atkins Diet as a stand-alone therapy, they cap carbs at 10 g to 20 g per day, which is less than Nora is getting right now. Because we are coming off of the diet they took the route toward a more normal diet first and favored increasing carbs, but that isn’t exactly the route to ending with the MAD therapy. Thus, as she continues to wean off the keto diet, we will now do a little course correction and increase her protein again, but there is no reason to take away her extra carbs if she is tolerating them well. And she is not only tolerating them well, but genuinely enjoying them! It has been wonderful to have a higher carb allotment during our summer fresh fruit season. Nora has enjoyed peaches, plums, pears and melons this summer, and just added back some bananas because she really wanted to try them again. We’ve even added a gram or two of honey to her steamed cream and toasting bread with butter. She gets enough carbs to enjoy that little bit of sweetness.
Following the schedule, her carbs will inch up a bit again by Christmas break, then we can slowly make adjustments between the carbs and protein if we want to go higher on her carb allotment. That will be our decision to make when we get there. We will also be able to start experimenting with approximating meals instead of weighing, which we will probably do gradually as well. We will be able to give Nora an idea of the foods that she can freely eat on MAD, given that her protein will be unlimited. But even now we increase her protein and match the fat needs if she is hungry. She has never been on a calorie restricted form of the keto diet.
In a funny twist of freedom, Nora ended up with an approximated lunch yesterday because we forgot to bring the scale to Portland with us! We planned for lunch at the McMenamin’s Kennedy School, where the Ted and the kids watched “How to Train Your Dragon 2” in the theater-pub. Nora had the hamburger kid’s meal, which comes with a side of carrot sticks and apples if you ask for them (normally it will come with celery as an option, but Nora doesn’t like celery even though she can eat it freely!) We had the meal all calculated, and brought cream to drink on the side, but no scale. Ted did a great job of estimating the hamburger and veggies and Nora was just fine.
Now that I am writing about this end-stage to the wean, I wish I had more time and quiet to talk with Dr. Wray about it. He took the kids into the hallway to do the walking/running parts of the neurological test and we got a chance to talk to Audrey about the wean, but I have more questions. I want to talk about the difference between the typical MAD breakdowns with so little carbs, and Nora being on higher carbs. I’m not sure if we are still shooting for mild ketosis or if we should expect her to come out of ketosis if we push her carbs up to 54 g in the final 1:1 option. In the end, the real answer is: “We don’t know. Nora will show us what works for her.” That’s the right answer because everyone is different. But it still helps a parent to talk it out in a little more detail for your own kid. That’s always a take-away from these appointments for me: to be extra prepared in thinking through the questions and taking extra time to develop questions in the moment.
And it sure would help if the kids were not in the room making a racket. We cram the 4 of us and 3 of her keto team into a small exam room, and my brain stops functioning efficiently. But that’s my problem, and it’s not treatable by modern medicine. Just a little more mindfulness.
We will have another appointment in March and are free to ask questions along the way. In one more bit of good news, Nora might be free of blood draws for some time and can start scaling back on the baking soda when she gets to 1:1.
There are a few more summer highlights to catch up on, things I could have blogged about but didn’t have much to report in terms of lessons-learned. We traveled to North Dakota to visit family for the first time since starting the diet. We got a cat and named her Gracie. We went camping, visited friends in La Pine and spent a week at the Oregon coast. We ate our rooster, Freddie, and enjoy eating the eggs from our hens, Sparklebeak, Starfall and Solveig. Nora is in first grade and started taking piano lessons. We hope she learns some Spanish this year to put her nice accent to use. Nora still loves to sing and dance. She is a happy kid, and that’s what really matters every minute of every day.
I so enjoy reading your progress! This is great-29 months! 🙂 And the honey in milk and fruit-truly a treat for Nora now. 🙂
It was fun to read about your most recent visit to the Keto clinic. We were just in to see Dr. Wray and he strongly suggested that we contact you. I think I always leave his clinic with very specific homework.
We are currently on the MAD diet but are considering moving toward a stricter version as it is working but her seizure threshold is very low. Currently we have a cold and seizures to go along with it.
Our daughter was also born in 2008. She was diagnosed very early with Tuberous Sclerosis and has struggled with several medications but no real seizure control.
Our second daughter is also named Nora. Love the name!
Anyway, just wanted to send you a note of introduction. We are here in Portland and find ourselves up on the hill a lot.
Hope your family has a wonderful holiday.
Hi April–we are happy to help! I hope increasing the ratio helps with seizure control for your daughter. That was our strategy with Nora, and I’m glad to say that it worked. We can also talk via email and I have had “keto support group” on my to-do list for way too long! We’ve been supporting parents through the blog, but I do want to start a dedicated group at OHSU to connect our families.
We are thankful that we aren’t up the hill much anymore, but we will have another appointment during the first part of 2015. I’d love to schedule a PDX keto family meet up.
Please let us know how we can be of help.
Where do you live in Or? My husband applied for a job in Bend. Our daughter has Glut1 and is on the ketogenic diet! It would be great to have support in Or if we move there!
We are in Corvallis, other families are in or around Portland but Dr. Wray has patients all over Oregon. I really do intend to start a support group, it’s on my list! Until then I’m happy to be a support to anyone who needs it. Bend is beautiful and you will get good care at OHSU. With Glut 1 you are in it for the long haul, but so worth it. Best to you and your girl.