To get updates when this blog is updated, there are at least two options:
1) Subscribe using an RSS reader and the “Entries RSS” link on the lower right of the page.
2) Go to http://www.blogtrottr.com/ and enter “feed://blogs.oregonstate.edu/oregonketokids/feed/” for “Feed URL” and your email address.
Looking forward to hearing more about Nora.
I am very interested in your blog about the ketogenic diet and Nora’s story. I have a 30 year old son with epilepsy. We are currently trying the ketogenic diet. Please email me back. I am having a difficult time getting onto your blog. Looking forward to hearing from you. Thanks Deanna
Thanks for your website! Our 2.5 year old son Colin started the diet in June and I am getting lots of great tips from you! I wish I was as organized!
Good luck Julie, and our best to Colin. It took us awhile to get this organized! Now we are in a comfortable groove. I hope you find your groove too.
~Christy
I am very interested in your blog,I Am from Honduras,I have a 26 years old son with epilepsy,he now is trying the diet,but we dont have recipies,sorry for may english.
Good luck, I hope the recipes here help, and I also suggest http://www.ketocook.com. And you should know about the Charlie Foundation (www.charliefoundation.org). They also have recipes and a lot of resources. My Spanish is worse than your English, so thanks for contacting us!
It is not allowing me to subscribe.
Hi Laura,
I think I need more information to help you out. By going to the Blogtrottr site and putting in your email address and our “feed,” you should get some kind of confirmation email that you have to click a link on to confirm. Have you gotten that far, or it there a problem with that?
Once you are confirmed, you won’t get anything until we make a new blog post. I haven’t posted anything since March 3 (and I’m crazy busy right now so I’m not cooking anything new!) If you have gotten as far as the confirmation link, I can try to make a quick post to test it out. I had to do that when we first tried out this Blogtrotter service, so let me know if you need that as a next step.
Christy
Do you have a specific journal or website that you use to track carb intake? What about meal plans?
We are using an excel spreadsheet that we made for ourselves while doing MAD. We enter the carb/protein/fat/fiber content of each food and calculate our own meals on a daily basis. Most families (at least in the US) are using the KetoCalculator, a tool created by the Charlie Foundation. You get access by working with a dietician who has access. The dietician also creates meal plans if you want it. We have access to the KetoCalculator, but we chose to stay with our own spreadsheet for daily use because we already had a process down when Nora went full keto. See more of the blog for more details.
We are just starting MAD. In fact we were told we were on the wait list to get into the nutritionist but it would be weeks to months. I need help getting started myself. We have started looking at carb counts but what else do I need to know. Also how do I measure out ingredients from a keto recipe written in grams? Thanks so much for helping newbies!!!!
Hi Heidi–sorry for my delayed reply.
We were given this resource when we got started, http://www.atkinsforseizures.com/
The e-book was very helpful, along with the recipes. There is also books out there to start with as well. We were just given these resources and told to go for it.
When we started, we made a list of Nora’s common foods along with carb, protein and fat information. You might want to add fiber now as well, which we did at some point because it sure helps if constipation is a problem.
I have been using this website to find nutrition information: http://www.caloriecount.com
You can put in an amount of a food, such as a tablespoon, and see the number of grams to do conversion (and vice versa). If you start an account you can also just use the tool to keep track of whole meals and see how all of the foods add up. I played with that when we started MAD too, but I ended up using a notebook to keep track instead of working at a computer, but that’s just me.
I also suggest just getting a kitchen gram scale now. We got one from a kitchen store that had an internal database of different foods, so you could enter the food code and see the carb/protein/fat/fiber break down immediately. It was very handy for MAD. Measured to a whole gram instead of a tenth gram, so it worked great for MAD but we got the more precise one for the keto diet.
Good luck–please contact us with questions. We are happy to help.
Hi Christy, I just read your blog and it is awesome. I am from Chile, South America. My older and previously healthy 4 yo son was in epileptic status for 1 month and a half at beginning of these year and he had surgery on march the 1st. He was discharged taken 7 different antiepileptic medications, and after a new generalized tonic-clonic seizure, on april 28th we began the classic ketogenic diet. It is good to know we are not alone and that someone else had to face the problems we are having right now . Today he is having fever and reading about the meds he can and can not take has been very useful. Thank you so much for sharing your experience. Good luck with keto weaning.
Hi Monica, I hope the diet is helpful for your son. It is extra hard when they are also sick and need medication. We understand what you are going through, so stay strong and please ask any questions that you have. I hope our blog can be useful to you, and wish you and your son all of the best.
Our family visited Valdivia, Chile for 1 month when Nora was 3, on keppra, and not having seizures (thankfully). We have happy memories of our trip there! Nora is in a Spanish-immersion kindergarten now, so maybe we can visit again someday and she can be our translator. I’m trying to learn more Spanish, but she is much better than I am.
All the best,
Christy
I came across your blog and I was just so happy reading about your beliefs regarding food and keeping the toxins away from our kids. My son has epilepsy and his neurologist would like to start him on ketogenic diet. I am worried about this and believe that the modified ketogenic version would work better for many reasons ( More options for a child/balance of nutrients/) I am also happy to inform you that I am originally an Oregonian who has been living in MN for 8 years. I also run a small childcare and I think this transition is going to be difficult but possible, I want to make him feel included is a big factor. I want him to see that we can eat some of the same things he is eating.
I want to stick to the diet as much as possible. One concern I have is illness and infection and constipation. Treatments for these conditions that can be given that still allow him to be on the diet. I am looking for nutrition replacement as well that is healthy and natural for constipation. What will help to prevent kidney stones as much as possible since they run in the family on fathers side? Is that the potassium citrate?
Are you keeping paper records? Did your dietitian give you charts with some ratios?
I think your story is inspiring and wonderful. I saw a picture of your daughter, go Beavers!! Ians dad is a Beavers fan=) My family lives and works out there=)
Hi Andrea,
You can certainly do it, but it might also be a transition for the other kids in your childcare if they are used to eating goldfish crackers and the like! We often say that Nora does eat the same foods as everyone else, just in different proportions. I have been a big proponent of making sure we are eating the same foods and Nora doesn’t feel left out when it comes to food.
To get an idea of every day simple foods, see Nora’s Top 15 Foods, The Simplest Keto Meals and Feeding our Kids, Ourselves.
Illness and infection happens to all kids, but in my opinion Nora has been remarkably healthy through the diet. It can be tough when she is sick, for example, if she has a fever we have to crush adult Tylenol instead of giving the kid version that has carbs.
Constipation is a problem especially right away. We consistently gave Nora Miralax for quite a long time. Eventually we started to track fiber and make sure she got enough during the day (see: The Virtues of Fiber). In conjunction with fiber, getting enough water is important. Nora has not had a problem with constipation for a really long time.
Kidney stones: Doctors will prescribe Cytra or Cytra-K (potassium citrate), but baking soda is a (not delicious) alternative.
We keep daily paper records of what we feed Nora, mostly for communication between us now, but also if something “went wrong” we can go back and see a pattern.
Dietitians have a range of ways to help you. We are very independent, so our dietitian has given us the daily targets for carbs, protein and fat (based on calories and ratio) and we make it happen. But that’s not really common or expected. You will get access to the Ketocalculator and your dietician can help you set up exact meals and snacks that you can put together. But you are in charge and your child’s best advocate, so use the resources to the fullest and ask for anything you need. As you get going, you will be more comfortable and be able to do more on your own with the tools that you have.
Recipes are also put into the Ketocalculator. I know that some are already there, but if you ever want another recipe added, you can ask your dietician to do it. I don’t know how your doctor’s office and dietician works, but I would encourage you to advocate for as much flexibility as you need, and food choices that work for your family and your child’s tastes and needs.
Please get a hold of us if you need anything–we are happy to help! Go Gophers and Go Beavs!
Christy
Hello! We are going to start my 15year old daughter on the MAD diet. She has intractable seizures so far since 2011. I look forward to learning all I can from your blog.
Thank you!
Let us know what we can do to help!
Good luck Kindra. I understand and can completely imagine that changing the diet of a 15 year old will be more difficult than a 3 year old (depending on your daughter, of course), so compliance will be key for you. Make yummy things!
Here’s a super easy and delicious recipe a friend just found and shared with me: 1/2 cup coconut oil, 1/2 cup unsweetened peanut butter, 1/4 cup cocoa powder (also unsweetened). You can add a tsp of honey or maple syrup if you want a touch of sweetness, or a little stevia if you want to do it without the extra carbs.
Measure all into a glass pour-spout measuring cup, then microwave 1 minute (or less if it melts quickly). Mix well, pour into small individual containers (1 tbsp each is good, the mini-muffin cups made of silicone will get a lot of use in your kitchen!), chill to harden, then YUM!
They are about 1-2 carbs each if you put in honey or maple syrup. Less than a carb if you don’t, and about 3:1 ratio (3 times more fat than carbs and protein), so it’s a nice and healthy fat boost for a snack.
13 y/o granddaughter diagnosed with JME August 2015. Started keppra (1,000 mg/daily). By end of May 2016 daily dose is 3,000 mg as grand mals continue (myoclonics appear controlled). June 2016 added Zonisamide to control both absence & grand mals. Daily dose is 200 mg and grand mals not controlled. Now she begins the MAD August 3rd. Feeling excited and hopeful. Reading as much about MAD as our brains can handle. Any tips & suggestions welcomed!
Thank you – Kiki & Family
You have our best wishes! I think it would be tough with an older child. Just remember that there are lots of delicious things to eat! We have lots of recipes for muffins, granola, cupcakes, and other good stuff so that she doesn’t feel like she is missing out too much. It might also take a little while to change her tastes, but keep trying things until she finds something she really likes. Our blog is full of tips and recipes, and please ask any questions if anything comes up.
Christy