On the ketogenic diet at a 3:1 ratio, Nora ate about 1200 calories per day. Broken down into grams, that is 10 grams of net carbohydrates, 28 grams of protein, and 115 grams of fat. Quick note on net carbs: you can take total carbs (starch and sugar) in a food and subtract the fiber because it moves right through the body without raising blood sugar. Fiber is awesome! Net carbs are strictly limited to 10 grams, so any wiggle room in the target amounts comes from varying protein and fat.
A 3:1 ratio means that Nora ate 3 grams of fat for every gram of carb + protein, so if she eats just 1 more gram of protein, I need to provide 3 more grams of fat. But that adds up to extra calories very fast. One gram of protein has 4 calories (carbs also have 4 calories per gram), while 1 gram of fat has 9 calories. So if she gets an extra gram of protein plus 3 grams of fat, that adds 31 calories (4 calories from protein + 27 calories from fat) to her diet. Considering that the keto diet is also calorie restricted—too many calories can interfere with ketosis and seizure control—we have to stick to these numbers fairly closely.
The traditional ketogenic diet sets a strict limit on carbs, protein and fat for each meal and snack, but our delivery of the diet is modified to allow some flexibility in each meal. We just try to keep it fairly even through the day until reaching the correct breakdowns by the end of the day. It requires some planning ahead and having targets, but allows flexibility. Each family should decide what works best for them and work with their dietician. To get started, it is probably best to stick to simple meal plans, especially meals that your child likes. As you get comfortable you could add new foods and flexibility to the diet when you need it.
One modification we made was to give Nora a higher ratio at bedtime. Her last breakthrough seizures were in the middle of the night so we adjusted by allowing a lower ratio at dinnertime then giving her an extra boost of fat at bedtime to keep her in ketosis until morning.
Below is an example of Nora’s meals for one day at 1200 calories, 3:1 ratio (she was 4; if you follow the blog, notice that later we increased her ratio to 3.5:1). She tends to eat the same breakfast and snacks every day—she goes through phases, eating the same things until she complains, then we switch it up and she sticks with the new plan for awhile, and so on. We build the lunch and dinners throughout the day depending on what the rest of us are eating or what we have in the house. We kept track of each meal as we built and served them, writing it all down and calculating a running total in the spreadsheet. Most families will use the KetoCalculator to achieve the same results.
Example day, 3:1 ratio, 1200 calories:
Breakfast: 1.7 g carbs, 3.65 g protein, 16.1 g fat, 2.5 g fiber (166 calories)
- 30 g of Chocolate Hazelnut Cereal (Chocolate Hazelnut Cookies, broken up)
- 6 g Organic Valley Heavy Cream, thinned with water to make “milk”
Snack: 1.8 g carb, 1.3 g protein, 9.3 g fat, 1.2 g fiber (96 calories)
- 1 Peanut butter-butter mix (with crushed vitamins, calcium)
- 12 g apple slices
Lunch: 1.45 g carb, 10.1 g protein, 34.3 g fat, 1.5 g fiber (354 g calories)
- 30 g Avocado
- Tuna salad: 20 g Full-fat Traditional Greek Gods Yogurt, 30 g tuna, 8 g shredded parmesan (of course, you could use mayo, but Nora doesn’t like it)
- 45 g cream plus 5 g coconut oil (steamed with cocoa powder, or add a bit of the cream to the tuna salad if you want to smooth the consistency)
Another sample AM snack and lunch: 1 T PB+Butter+vitamin with 10 g apple, 1/2 slice turkey, 14 g red pepper, 1/2 Tbsp double-cream-cheese (equal parts cream cheese and Double Devonshire Cream), a hard boiled egg and 1/4 c heavy cream and cocoa (not pictured). 3.6 g carbs, 12 g protein, 40 g fat.
Afternoon Snack: 2.7 g carb, 2.4 g protein, 15.6 g fat, 1 g fiber (160 calories)
- Berry Frozen Yogurt Pop (revised from lined recipe at 3:1 ratio, includes whey protein powder)
Dinner: 1.1 g carb, 10.5 g protein, 22.5 g fat, 2.25 g fiber (250 calories)
- 12 g baby carrots
- 40 g egg + 15 g cream, scrambled
- 14 g shredded cheddar
- 7 g Flackers + 4 g butter (can mix butter with a sprinkle of cinnamon)
Bedtime Snack: 1.25 g carb, 0.2 g protein, 17.2 g fat, 1.4 g fiber (160 calories)
- 22 g raspberries
- 30 g cream + 5 g coconut oil (steamed with a drop of vanilla or pinch of cocoa powder and crushed calcium tablet)
Totals for the day: 10 g carb, 28.1 g protein, 115 g fat, 9.9 g fiber (1200 calories)
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Another dinner: “Mac-n-cheese” (Miracle Noodles, cream, cheddar), 2 slices bacon, 32 g red pepper (about 5 slices), 1 flacker, 1/4 part-skim string cheese (melted). 2.1 g net carbs, 10.45 g protein, 15.3 g fat
We also have to be sure that Nora is drinking enough fluids. We use a supplement called CALM, which is a powder to mix into water to make her “lemonade.” It has a magnesium supplement, which is a gentle laxative, and a calcium supplement which most keto kids need (notice we also mix 500 mg calcium into one serving of her hot cocoa, above). This version is lemonade flavored and slightly sweetened with stevia. That is the only no-carb sweetener she has been getting. She doesn’t mind drinking her hot cocoa without sweetener (although she spits out any “cocoa pits” that don’t get completely dissolved).
For more ideas and lists of foods that work on a ketogenic diet, see these posts:
Also see:
Hi,
Your site has been so encourraging. My son with special needs is also epilleptic and he is 15 yrs old. we have tried all medications but he is not seizure free. My hope is keto foods should help him to control his seizures. However, I was not confident that he will be able to just eat cheese and meats all day. There seems to be hope now.
There is hope! Good luck. I am sure that it is difficult with an older kid, but if he is also motivated to try it then it will help a lot. It’s a great time to be a keto-kid, there are so many options if you are willing and able to cook for him. We wish you all the best!
I have been trying to find a variety of recipes for my daughter….we are new to the ketogenic diet and totally struggling with variety. We have been up and down the AED spectrum with meds to no avail. We have yet to see a decrease in our numerous daily seizures in the 3 weeks since commencing the diet, however, the fog that she has been living under as of late has lifted and she is almost back to being a typical almost three year old. Unfortunately I am nowhere near the cook you are, but am totally bookmarking this page to try some of these recipes. We are, for the moment, also on a 3:1 ratio. Thank you for bringing encouragement to me through your site.
Hi Christina–we wish you and your daughter all the best! I have read some parents who say that they can’t get real seizure control for some time after starting the diet, and especially until they start to wean some drugs. Keep at it! It’s so hard to do it day to day, and I know that you need to see results to make it all worth while, but if you stick with it I really hope that it helps. As we saw improvement with Nora’s seizures, we saw that she got better as we got more strict with the diet, until she stuck at 3.5:1 and seizure-free. Her doctor says that a higher ration is like a higher dose of medication, so if things are better you can always go higher on the ratio and hopefully see better results.
If you want to use any of our recipes, you are welcome to give them to your dietician to enter into the ketocalculator for your use (if you use it). Our dietician has entered some of the recipes for other families that she helps, and has verified that these nutritional facts are very close to what the ketocalculator says. Then it will be easier to use them too! Variety is important. We go through phases of using the same foods for weeks, then Nora gets sick of them and we switch to something else for weeks. Now that we have over a year on the diet, we are cycling back through old favorites again and again instead of creating so many new ones. Let us know how it goes!
My daughter has been on LGIT for epilepsy for just over 3 years and I feel like we hit a rut. The same old foods all the time and little variety. Thanks for the new recipes and inspiration!
Though she’s not seizure free with diet it has significant reduced her seizures taking her from 60/day to an average of 5-10/week.
That’s great, and it’s great to know that families choose the diet-level that they want to get the best balance for their families. We started with LGIT and could see that it helped a tiny bit, but not that much. We had to go higher ratio, but so worth it!
We are new to this whole topic…only a few months in actually. Everyone mentions the keto diet but since his two meds look like they are holding him and we are so new; no one wants us to think about any form of keto or modified until we are stable for 6 months. Couldn’t I just read, learn and try on my own while he is on the meds? Do you really need to be hospitalized for 5 days to learn this? Can you buy a ketocalculator on your own? My husband and I are both nurses and our family eats very healthy organic and low sugar normally. TIA
Hi Tina,
Of course, you need to be on the same page as your medical team so that you know what works and what doesn’t work for your son. But that said, I can say a few things about how we moved into diet therapy.
There are several forms of diet therapy that go from very light to very strict. We started low-glycemic index treatment (LGIT) with Nora while she was still on drugs and still struggling, and her docs were fine with letting us try that on our own. It doesn’t require any weighing, just being aware of foods that are low-glycemic index. I think it helped her mood, but not her seizures. Some people get better results.
When we started Modified Atkins Diet (MAD) we were at the point where drugs clearly were not working for her and her medical team was totally on board, although stressed that it would be difficult. MAD is kind of DIY anyway. The resources we were given are here: http://www.atkinsforseizures.com/ And were were told to go for it. There is a helpful e-book that you can get from that site. We made spreadsheets of foods and kept track of her meals to make sure we were getting it right. We got some results, but realized that as we were more strict her seizures were better.
As a result, we moved to the full keto diet, and just increased the ratio over time in consultation with her doctor and dietician to keep seizure control. Nora never did a hospitalized induction–so that answers your question about that–and I’ve heard that many doctors are accepting non-hospitalized inductions now but many are still doing it.
The full keto diet requires medical supervision because it sends the body into such an extreme state of ketosis. Nora has blood draws every 4-6 months for monitoring. You only get access to the ketocalculator, an online tool maintained by the Charlie Foundation, through working with a dietician. So you really should not do the full keto diet on your own.
From a practical perspective, I would also suggest doing only very light diet therapy now to fully gauge your son’s response to the drugs. If you do everything at once, they can’t know what is really helping and he may be stuck on those drugs for a long time even if they are not providing the main therapy. We were thankful that Nora’s doctors did one drug at a time (except for the wean off-wean on), then when she started the diet we could see improvement even while on the last drug, so we knew that it was the diet that was providing the benefit. They let her go off the drug after 4-months seizure free while on the diet. Now she is only diet, seizure free and drug free.
If you would like to chat more here or by email, please let me know. Good luck–I hope that your son continues to do well.
Christy
Hi Christy,
Stumbled upon your great, informative site. My 3 years’ old granddaughter has epileptic condition somewhat similar to your daughter’s. She started having seizures at around 23 months’ old. She is now on MAD and medication to control her seizures and she is doing quite well. Her mum had resigned from her job to look after her full time. Her doctor said she’ll start lowering the medication dosage in a few months’ time if her condition remains stable (she had a relapse in March 2013 after being medication and seizure free for 5 months).
I’m very interested in the ‘CALM’ supplement. Are you giving her the Kids Calm Multi or another type? Will the Kids Calm Multi be suitable for her? She’s not taking any supplements except the magnesium oil which her mum rubs on her limbs at night.
Also please tell me how to enter the site of the ‘ low-carb blog written by a baker ‘ as mentioned in your blog? The ‘Privacy Policy’ is the only item I can view there.
Hi Belinda,
I hope your daughter continues to stay seizure free and improve. If you read on in our story, Nora had to increase her ratio as she had breakthrough seizures until she reached a 3.5:1 ratio, where we are keeping her until her 2 years of seizure freedom (5 more months to go). Increasing the ratio is like increasing the dose, so they say. There may be some rough times still ahead when the medication is weaned, but stay tough and on course.
This is the CALM we use, link to the specific raspberry lemonade version on Amazon: http://www.amazon.com/Natural-Vitality-Calm-Raspberry-Lemon/dp/B00BPUY3W0/ref=pd_bxgy_hpc_img_y
Nora likes the taste so it is a way to give her a special drink now and then. She is not having it daily anymore, as constipation is under control.
Thanks for the heads-up on the baker Candice’s blog. She moved! Lucky I remembered her name so I could google it! Here is the link to her new site. I will fix that: http://tmstrevival.wordpress.com/
It’s interesting for me to go back to some of these old posts and see such a little Nora and how far we have come. Keep reading for the rest of the story!
Best to you, your daughter and granddaughter. If there are many similarities in their stories we can talk more. Our doctor is very interested in finding other stories like Nora’s to see if they can find a common thread to help others.
Christy
We are starting our daughter on this diet, because since she has been on anti- seizure drugs her siezures have only gotten worse. How long did it take before your saw an improvement in Nora’s seizures. Also what type of store did you find the Flacker crackers at?
Hi Teresa,
Nora’s seizures got better almost immediately. She was only having myoclonics at the time. We were counting daily and keeping track. Ted made a graph showing seizure counts, medication doses and diet ratio. This was the last one we posted: http://blogs.oregonstate.edu/modifiedketogenicdietforepilepsy/2012/10/16/neurologist-visit-and-update/
We started her on MAD at the beginning of Dec. Then we noticed a pattern of decreased seizures for the most part (when it had been climbing steadily before). Around 12/16/11 on the chart there is a spike in the green line, showing a higher diet ratio that day. The next day the seizure count plummets to 0. Then following days when the diet ratio is not so high there are more seizures. When we realized that pattern was going on we got stricter on the diet and kept a higher ratio consistently, shifting from MAD to keto diet more strongly. When we got up to 3:1 at the end of December the seizures almost entirely went away, with a little spike in early January. I think mistakes were made then (can’t remember now the details). Then up to 3.5:1 after the last tonic clonic and seizure free ever since.
I think you will see a difference fairly quickly, but remember that it takes some fine tuning and learning to avoid certain things. I would stay away from any no-carb sweeteners, sugar alcohol and other processed foods as much as possible right away. When ketosis gets strong, seizures are away for awhile and your daughter is more robust then you could introduce other these things gradually. I think that was part of our mistakes with Nora, going for “treats” fairly quickly that had blood sugar effects, even though they were technically carb-free.
I find Flackers at our natural foods co-op and a higher-end grocery store here in Corvallis (it’s a regional chain: Market of Choice). I know that you can order them online also. The original rosemary flavor has a lot of fiber and very few carbs. I saw a new berry flavor and checked the ingredients and nutrition, and found that it has more carbs because of the berry juice or dried berries. Just know that there is a difference when you make your choices. The berry ones will probably work fine too, as long as you know the nutrition information.
Best of luck, feel free to contact us with questions or for support. We are happy to help and will keep you and your daughter in our thoughts.
Christy
Hi christy,
My name is sharon and today I got so frustrTed with what to do. We came back from the ui hospital last Friday 14 / march 2014 . We were admitted to start the diet for Son. He seizures are the same and can,t help crying when he keeps bumping his head he has only the drops seizures and normal development. When will this diet start working. We are a week into it,no idea just. Confuse and he hates the cream so much. Can you please help tell me something. I need a lot of help and you are the first I am writing to. He will be two in a week and has drop seizures now for about three months.i am a good writer so bear with me. He is on 3:2:1 and always hungry all these. Makes me confuse and don,t know if I can increase the food without the nurses knowing lol.thanks sha
Hi Sharon. It is going to be ok. Does he have Doose syndrome? That is usual with drop seizures, and the diet is the very best treatment if it is Doose. I know several Doose families who have kids doing great on the diet.
You have to be patient though. Most kids don’t get seizure free right away. Are you counting seizures? You should be keeping count every day, just make a tally on a piece of paper. Maybe he will have 10 today, but maybe it will be 8 tomorrow and if you aren’t counting you would not notice that it is getting better. It will probably be a slow change, and can take months. It can also take months to really figure out how to do the diet right. So be easy on yourself and keep trying.
Talk to the nurses or dietitians if he is always hungry. They can tell you how many more grams of everything to give him to keep the ratio right and keep track of how many calories he is getting. If he doesn’t like cream right away, be patient and keep trying it. Try putting a drop of vanilla extract into the cream and mixing in a little bit of water to thin it. We call that “keto milk.”
It takes time for him to get used to these changes, and if he is only turning 2 you can’t reason with him very well. Just keep trying things until something works, and he will get used to it.
If he is also still on a medication that might affect his seizures too. Many families say that their kids are not totally seizure-free until they go off medication too. I think his doctor will have a timeline, like seeing seizures go down for a few months to show that the diet is working, then taking away a medication.
I know it is hard, it is worse than hard, it is the worst think you will experience to watch your child have seizure all the time. But stay strong because the diet can be amazing. You have to be very patient and very strong, but it can be a miracle if you stick with it.
All the best,
Christy
Thanks christy
They said he had infanta spasm at first , the after the MRI the said nothing was found but that he had primary e , then myclonic or atonic we don,t know what he has exactly but he drops on the floor a gets back right up and is ok no tiredness or lost of consciousness . Sometimes he just drops his head when sitting but still does what he was doing. That’s all he is suffering from. Thanks for writing back and I feel good to know Nora is well that gives me a lot of hope
Thanks Sharon. Drop seizures are usually associated with Doose, but that also has an EEG pattern that they usually see, so if they didn’t see that then maybe they will keep watching and waiting to see how it develops. I hope that the diet works for him. It’s been amazing for so many kids. Just keep at it and be patient. Check back and ask any other questions that you have.
As the parent, you have so much responsibility and it can feel overwhelming. Your job is to keep strong and make sure that he is eating everything he needs to eat, so work with him, trick him into eating it, whatever you have to do! At the beginning we spoon-fed Nora for a very long time to get everything in her, while she was playing, anytime to get the right food into her. There is a lot of hope.
I meant to say I am not a good writer. Hope you make sense of my writings
We are starting day 1 on a modified ketogenic diet (I pushed to try the diet before any meds) so I am in the begining stages. How do you determine how many calories & fat to feed her. We are trying to get a good start prior to seeing the nutritionist at Doernbecher
Hi Tanesha,
You should probably start with Modified Atkins Diet if you have not seen the nutritionist yet. It’s an gentler start, we did it that way too, and you don’t have to weigh and calculate to specific amounts. It was only when we got more strict with her diet that we got calories, grams of carb, fat and protein breakdowns from the nutritionist. We don’t do that ourselves–there is a certain amount of things that she will need to continue to grow properly, and the nutritionist knows how to calculate that.
Doernbecher referred us to this book to start MAD basically on our own: http://www.atkinsforseizures.com/ And were were told to go for it. There is a helpful e-book that you can get from that site. At that time I used http://caloriecount.about.com/ to track some of her meals and look up nutritional information on whole foods (that don’t come with a label!). I hope you can get into Doernbecher soon to get more guidance. They will need to do some metabolic tests to make sure her body can handle the keto diet, so please wait before going very high-fat to make sure it will be safe for her.
The good news is that if you start MAD, she will start to get used to a “special diet” more slowly, and you might even start to see some seizure relief. That would be great news, because maybe you could do it like us and be stricter than MAD, but lighter than the full classic ketogenic diet.
Good luck, keep us updated!
Christy
Hi Christy, thanks Nora’s information good help for me to take care my daughter.
my daughter 7 years old. she has a absence seizure that seizure control by her medicine but she has always every 10-15 days through up(Vomiting up) happen. doctors does not know why it is happen it is not medicine side-effect but may be she has abdominal migraine or seizure. just last month suggest for keto-diet. I am very unknown about that and I learned through online search. we are Indian vegetarian Indian family but I never forced my both kids always says whatever they like they can eat my 5 years old like everything but my daughter doesn’t like any type of meat. In her abdominal migraine or seizure happen any time may be in park, school, house. and her symptoms are she complain for tummy hurt and she feel dehydrate she can’t sit she need to just sleep down on flour or road anywhere. then she is so much cry for tummy hurt and try to split out everything. after that I can’t feed even drop of water if I feed she through up again. after 3-4 vomit she again still feel like to through up but she can’t and complain and suffer lots of for stomach pain, and her body stretch. after each through she sleep immediately like a deep sleeper but again 10-15 mints she try to through up and cry. this whole episode happen 6-8 hours then after next day she feel back to normal with no absence seizure. we don’t know why it is happen but as a mom I want to try for her keto-diet. your website very helpful and give me more power for do something my daughter. one more time thanks and pray to god for Nora.
give me more good strength, I am very worried for my daughter.
Hello, thank you for the good thoughts for Nora, and so sorry to hear about your daughter. I hope the keto diet helps her. I think you can do it and stay vegetarian. She will need sources of protein that do not have a lot of carbohydrates, cheese like paneer would been good. It is difficult to do any kind of legumes like lentils or beans, but I think that your dietician could help you. You can get a lot of fat like coconut oil or ghee into a dish like dahl. You have probably found many good websites with resources for cooking indian food on a ketogenic diet, but I remembered seeing this article: http://www.thehealthsite.com/diseases-conditions/ketogenic-diet-for-preventing-epileptic-attacks/ There are also a few recipes from Matthew’s Friends in the UK: http://site.matthewsfriends.org/index.php?page=recipes-from-india
I don’t know anything about the abdominal migraine or seizures, so I really hope the diet is helpful for her. Good luck, we will have you in our thoughts.
Christy
I read your blog after a friend shared the site. Wow, you are amazing to go as far as you have. My dd is 10 and has uncontrolled seizures, diagnosis of BRE. Though she is likely to grow out of them, her case is very atypical. They started out only in her hand, but over time involved her whole body. She has failed 3 drugs already, and on a fourth. Her symptoms are not the norm with one sided seizures almost exclusively, though the other side is sometimes included but never the only side, and then has Todd’s Paralysis after. A friend told me about the ketogenic diet in January and I decided to wing it. I read that it is supposed to be monitored by doctors, etc. but I don’t know anyone who is doing it and there is no clinic in my area. She did well, but still had break through seizures. After a bad month in March I was wondering and praying about what I should do and I went back to researching online. When I went back to the Charlie Foundation they had redesigned the site and it some how clicked with me that it is not enough to cut out the carbs and sugar but pairing the fat to it is critical. Things improved, but still had some break through seizures. Her doctor asked if what we were doing was actually the modified Adkins, and after researching more, I realized that is what we are actually doing. When I read your blog I understood more what we need to do. I knew that avocados, heavy whip cream and coconut oil were our friend, but with out documenting, I never really know if she has had enough fat or not, and what is the ratio. I just wanted to help my little girl stop seizing not get a degree in nutrition! But, since I can’t really be able to tell my doctor that it is the diet not the meds that are helping her without documentation, I am trying to do that. I don’t know how to set it up though. I was wondering if you could explain how you document. I read about your pdf and I don’t need yours, per se, but how is it set up? Do you list food for the day on the left column, then nutritional info across the top? Sorry I am one of those folks who needs to see it to get it. Once I get the concept I can run with it all the way home. But I have spent 6 weeks just stumped as to how to document this (which is ironic as I am a home school mama of many and my day is filled with documenting learning, etc.) Any help appreciated.
Hi Beth,
First, good job doing everything you can to help your little girl. You will always be her best advocate. And you can do this!
Next, your doctor needs to get the message that this is a real medical treatment, and the only thing for some kids. One of the main epilepsy societies now considers the diet the tertiary treatment–it is the go-to option when 2 drugs fail. The diet is more likely to work than a 3rd drug. Your doctor should get in touch with the Charlie Foundation.
But most importantly for you, you are starting her out on mild diet therapy and seeing a difference. Sounds like you were doing a Low Glycemic Index Treatment (LGIT) by cutting the carbs and sugars. That’s the lightest form of diet treatment. When we started diet treatment for Nora, Doernbecher referred us to this book to start MAD basically on our own: http://www.atkinsforseizures.com/ And were were told to go for it. There is a helpful e-book that you can get from that site.
At that time I used http://caloriecount.about.com/ to track some of her meals and look up nutritional information on whole foods (that don’t come with a label, like avocado!). It is set up as a weigh loss community, but go to the link menu bar Tools>Food and Recipes and you can look up nutritional information on foods in different ways, like specifying “1/4 medium avocado” to get estimates for nutritional breakdown if you are doing the MAD diet. The Recipe Analyzer tool is how I get “nutritional labels” on the blog for the recipes that I make. It is a handy tool for DIY diet analysis.
If you think she will do better on higher fat and lower carbs and want to go to the stricter ketogenic diet, you should get medical supervision. They will need to do some metabolic tests to make sure her body can handle the keto diet, so please wait before going very high-fat to make sure it will be safe for her.
I will send you an email with some additional guidance about documentation because it will be easier to do that way, I think. But the book on MAD was how we got started (link above).
Christy
I know that cream is a cornerstone of your treatment for Nora.
Now that you are weaning, I was wondering where whole milk fits into the picture – are you avoiding it or do you use it sometimes?
What about almonds?
I guess what I’m wondering is, I read a post where you said you thought caffeine had triggered a seizure. Do you avoid anything else ‘allowed’ on MAD/ketogenic?
Thank you so much. This blog is a great resource.
Hi Nancy,
In the very beginning we tried several things that are allowed on MAD/keto, mainly in the no/low carb sweetner category. We can’t say for sure that those were seizure triggers, but after bad experiences with some of those treats I used artificial sweeteners sparingly. The trigger one day seemed to be a keto brownie recipe with a lot of cocoa powder and stevia powder, so I don’t know if it was the caffeine or the artificial sweetness, but we cut back on both for a long time. I also did a lot of research before letting her have sugar-free gelato for a treat (and counted carbs with a best estimate) and she had several breakthrough seizures.
I think in the beginning of ketosis the body is much more sensitive to changes or sweetness. There was a study that showed that diet sodas increased the insulin response because your brain also perceives the taste of sweetness (even without carbs or calories) and helps to start a blood sugar response process. The blood-chemistry presence of real sugars were not the only factor. I figured that if there is some brain response to sweetness that starts the chemical reactions to deal with sugars/carbs, then maybe the seizure trigger is bound up with it. In addition, sugar alcohols and other artificial sweeteners do have a carb equivalent. You can’t drink a bunch of 0 calorie, 0 carb drinks on a keto diet because it is not actually 0–when you are only allowed 10 g carbs per day, even a drink with less than 1 carb will add up fast. We found that out when Nora needed a sedative at the dentist, delivered as the syrupy solution made with sugar alcohols. Our dietician told us to count it as around 3 carbs! Clearly I’m not a doctor or neurologist, but it seemed prudent to me to stay away from artificial sweeteners of all kinds. You will find a lot of recipes that use the no-carb maple syrup or other sugar-free flavored syrups, but I don’t use them at all. I do use a little bit of stevia sometimes, but otherwise use whole foods for sweetening and flavor.
We still avoid whole milk for Nora because it is fairly high carb, and I would rather give her carbs via fruits and veggies. I have a carton of whole milk in front of me because our son drinks it, and it has 12 g carbs, 8 g protein and 8 g fat in 240 mL (grams, or 1 cup). That’s very low ratio so she would need a lot of cream on the side anyway. I looked at half-and-half as an option for her, which is just under a 2:1 ratio. As we continue to wean we may be able to start using that. But we still need plenty of cream to boost the ratio because she is eating a lot more fruits and veggies with her increased carb allotment (yay!), so whole milk doesn’t really fit in the picture yet. That said, I just made a bread recipe last night that used some whole milk and some cream because I ran out of cream! Of course, I counted it and the recipe ended up higher carb and lower fat, but in a recipe you can get away with some whole milk.
Almonds are great but not a staple on a very high ratio. As far as nuts go, they are higher-carb and lower-ratio than most others, at a 1.6:1 ratio. Therefore, if we give her almonds now we still have to supplement some fat. Walnuts are 3:1 and macadamia nuts are 5.4:1, so those are ratio-boosters for her now. In the past, I didn’t use much almond meal in baked goods for that reason but now I will use it more often as we continue to wean.
Happy to help!
Christy
Hi! My son is suffering from Spasm West syndrome since 3 years. My doctor have suggested me for Ketogenic diet plan. But i m afraid as he is already very fussy for eating. Can anyone suggest me about the basic ingredients which are allowed to be eaten in this plan. We are pure vegetarians. Please help me
Hi Pooja,
I think it would be fine to do the ketogenic diet as a vegetarian. You can see from this post that meat is not required for many meals. Also, this post: The Simplest Keto Meals (http://blogs.oregonstate.edu/modifiedketogenicdietforepilepsy/2013/12/15/quick-keto-meals/) as no meat at all. This post: Nora’s Top 15 Foods (http://blogs.oregonstate.edu/modifiedketogenicdietforepilepsy/2012/10/18/noras-top-15-foods/) includes no meat but one mention of tuna fish.
Tofu works for the keto diet. It has some carbs, but not so many that it is prohibited. Beans are more difficult because they have a higher carb content. Most vegetables can be used on the ketogenic diet, for example: cauliflower, broccoli, sweet peppers, carrot and onion.
If you were doing the Modified Atkins Diet, it would be much harder to do it without meat. The protein requirements are much higher.
We do use a lot of dairy products in Nora’s diet, so if your son can eat dairy (especially pure heavy cream), it is much easier. Nuts, particularly macadamia nuts and walnuts, are also fantastic if he can eat nuts. Avocados and olives are foods that are very high in fat and can be added to any meal to provide some of the fat.
Matthew’s Friends is a ketogenic diet group in Britain and has a page of Indian ketogenic diet recipes: http://site.matthewsfriends.org/index.php?page=recipes-from-india
Keep looking for resources and please let us know if we can be of further help! Good luck, I hope the diet helps your son.
Christy
Hi,
Thanks for your blog its been very informative!
My daughter who is 3 has been having partial seizures for the last few months. They only last for about 7 seconds but seem to be getting slightly worse over time. They were happening 1x a day and now am up to 4x a day. We have scheduled and EEG and an MRI but our neurologist really wants her to start meds right away. We are a wholistic family and would like to slowly transition her diet to the keto diet and see if we can get results without medication. What are your thoughts on that? Im reading so much about kids not responding to medication, that I almost dont even want to try them.
Hi Rebecca,
I’m so sorry to hear that your daughter seems to be getting worse, but you are on top of it and doing the right things. You should seek out more advice. Is your doctor receptive to the ketogenic diet as a treatment? There are certain types of epilepsies that respond very well to the diet. If your medical team can give you a more precise diagnosis, then you should see if the diet tends to work with that condition. Then I would highly recommend going with the diet instead of drugs.
If it is an unknown cause, like Nora’s was, then it is harder to say. Her doctors definitely wanted to try drugs first and we did that without really knowing about the diet, but we were also very proactive and assertive about changing her treatment when she didn’t seem to respond, or when things just consistently got worse. It sounds like you are keeping close track of seizure activity, so you will know if things are getting better or worse.
I don’t think it hurts to start changing her diet to see if she does seem to respond to some diet therapy. We did that with Nora and felt like we could see a pattern. First we did Low Glycemic Index Treatment, just taking away all refined carbohydrates and foods high on the glycemic index, but not restricting carbs. We didn’t think that did much for seizure activity. Then we started Modified Atkins after talking to her doctor about diet therapy when drugs weren’t working. We definitely saw a difference. Modified Atkins is not as restrictive as the ketogenic diet and can be done with little medical supervision. We were given guidelines and told to give it a try. Don’t try to push the ratio higher than 1:1 without medical supervision and blood test to be sure that there are not some underlying issues. If you can see results, then you have a good reason to believe that increasing the ratio will help even more. Nora’s doctor let us go that way, and we just increased the ratio with every breakthrough seizure until she reached a 3.5:1 ratio. Her doctor told us that a higher ratio is like a higher dose of medication. We could tell it was working, but we just had to keep pushing it up until she was seizure-free and then maintained at that level.
I’m not sure where you are located, so I would recommend looking for a hospital with support for the ketogenic diet if your doctors don’t have the training and resources to support it. The Charlie Foundation has a list of hospitals that have keto diet centers. http://www.charliefoundation.org/resources-tools/resources-2/find-hospitals. They also have lots of information and resources. If you found us, you probably already found them! I have been very thankful for the support we have received from Doernbecher Children’s Hospital.
Best of luck, keep us posted. We have plenty of recipes that will work well with Modified Atkins, although I will be the first to admit that the very old recipes aren’t the best ones on our blog. I definitely learned as I went along and my recipes got better! Plenty of the baked goods have a lower ratio that would work well with MAD. If you see something that is written in grams and want a translation to common measurements, just let me know.
Christy
Hello
Thank you so much for writing this blog!
On December 28, 2017 our 6 years old son had a Peti Mal and Grand Mal seizure. We were discharged 2 days ago and are awaiting to do more tests, in meanwhile he is taking Clobazan until we see specialists and get results of his previous tests. His calcium levels have been decreasing from Friday 2.4 to Monday 2.0 and it keeps decreasing even if we have been giving him daily calcium pills and increasing dairy intake. So we are awaiting for test results for Chromosome defect that might be the cause of his calcium deficiency. I was wondering if your children caused for seizures have been found. I am awaiting to meet with our physician to decide if we should proceed with Keto diet.
I will keep reading your blog.
Marie
Marie,
No, we never had a genetic determination for Nora’s seizures. Nora is a strange case — our neurologist said there are only a handful of cases like hers — in that she was having multiple seizure types, including myoclonics, which normally portend difficult epilepsy cases, but did not show significant cognitive decline, nor did she respond to medications, and then after several years on the ketogenic diet, her epilepsy appears to have completely resolved.
So we don’t know why she had seizures. She did have genetic testing for the major myoclonic epilepsies and they all came back negative. Additionally, her blood work and any other tests — including MRIs, EEGs, etc. — have always looked good. The best guess we have is that she appears to have had an unknown genetic basis for it that she either outgrew, or was fixed by the keto diet in some way.
For you child, it is important to note that the keto diet is calcium-deficient. We supplemented calcium for Nora just as a matter of course for almost all of her time on the diet. If you have a concern about calcium deficiencies, that would definitely be something to keep in mind and discuss with your medical team.
I’m sorry to hear about your struggles. I know it is very stressful. Keep putting one foot in front of the other and let us know if we can help.
Hello Christy and Ted.
I’ve been meaning to THANK YOU for your blog! Our son started the ketogenic diet in April (seizure free since day 4 on it 🙂
He’s been having the chocolate hazelnut cereals for breakfast for about 9 months straight now and loves it. One of our favorite recipe!!
Your blog and recipes were very inspiring and definitely helped us
Thanks again for taking the time to write it
Anne-Marie and Thomas
That’s wonderful Anne-Marie! We are so thrilled to hear that your son has been seizure free for so long now. We know how great that feels–we are celebrating with you!
I’m grateful for your note, it makes me so happy to hear that Nora’s favorite recipes have helped other kids and families. We know how hard it can be to do the diet and find foods that your kids love!
Keep up the great work–you are heroes for your son!
Christy
hi, my name is Tulay and we live in Orange county,CA
my daughter is 10 yrs old and has complex partial seizures, she is seizure free for 2 yrs now with medication. She takes Depakote,Felbamet, and Onfi.
She contacted the diseases called bacterial meningitis when she was 2 months old while vacationing in Vancouver ,Canada. Because of the brain damage she has seizures.I was looking into keto diet because I want her to be off of the medication.
I would like to know when you stared the MAD diet is there a kids recipes that you have followed? I am very scare to start on Keto diet everyone is saying it is extremely difficult even her neurologist. (I am not good with math) because of religious reasons we don’t eat bacon, what would be the good substituted for it?
thank you for your time
Tulay
Hi Tulay,
So sorry to hear about your daughter’s seizures, and I’m sure that it’s not easy to be on those medications. I can’t say if the keto diet is typically used in your daughter’s situation, but if your doctor thinks it could be useful, then it is worth a try. Nora’s doctor also started by telling us that it is so hard, but honestly, it was easier than seeing her have seizures and deal with the medications. If you have a good keto support team with a dietician, you should be able to prepare her meals without having to calculate anything yourself.
We started with MAD with some help from Nora’s dietician. We have lots of recipes on our blog, which you could show your dietician if you see things that you think your daughter would like. You can definitely do it without bacon or pork of any kind! I know keto families who were vegetarian or dairy-free. It changes the foods that you will rely on, but you can definitely do it. If your doctor’s office doesn’t have keto support, or a dietician, it would be good to find a clinic that has good support for the keto diet.
The Charlie Foundation has a lot of information, recipes, and resources: https://charliefoundation.org/
Here they even have a “find a hospital” list. Here is a link to the California hospitals: https://charliefoundation.org/find-a-hospital/?region=united-states&state=california
Good luck, and feel free to ask more questions! We are here to help.
Christy