My goal here to to describe our “modified” version of the ketogenic diet that is giving Nora great seizure reduction, almost 100% of this writing. Although still very rigorous, I think of it as keto-lite in practice. To describe what I mean, I think I need to tell the story of how we got to this modified version of the keto diet. (For the background on Nora’s epilepsy, please see the “Nora’s Story.”)
The ketogenic diet for epilepsy hit the mainstream in 2010 with an article in the NYT Magazine, “Epilepsy’s Big Fat Miracle.” I recommend it for a history and description of the typical keto experience; I will not repeat those details here. Read the article and more of the “modified” will make sense when I describe Nora’s diet.
When Nora started having myoclonic seizures and was not responding to anti-seizure medication, several people pointed me to the article. I finally, reluctantly, read it. Reading stories of other kids’ struggles with epilepsy was difficult for me. On one hand, I felt that we had it so much better than other families because Nora was not having hundreds of seizures a day like other kids. On the other hand, I was afraid that I was looking into our future of intractable epilepsy. Many kids started out like Nora.
A few things in the article were daunting to me. First, the image of the weekly intake of bacon, butter and cream was a little shocking:
Stephen Lewis for The New York Times; Food Stylist: Brett Kurzweil
Second, this line resounded in my head: “To jump through these arithmetic hoops, Evelyn [Sam's mom], [ ] gave up her career to take on the now full-time job of feeding Sam.” Could we do this? I knew I had the skills. I love to cook, have a working knowledge of nutrition, better than average math skills, and an anal attention to detail. But I am the first to admit that I am a happier person and better mother when I have a nominal amount of intellectual work and time away from my children. If one mother had to give up a CAREER to feed her kid, did I really want to do this? Because as we knew, food preparation is my department in our house.
The article gives you a good description of the diet: 3 grams of fat for every 1 gram of carb + protein. No more than 10 grams of carbs per day. Weighing food to the gram to calculate the carb/protein/fat breakdown of each portion. Scraping out the weighing bowl and getting every bit into the kid. Being sure that each meal meets the diet’s requirements to keep the ratio constant. And not to be overlooked, a hospital stay to initiate the diet with a fast and monitoring.
You should also know that there 3 diet options for epilepsy treatment. The least strict is a low glycemic index diet, which allows 40-60 carbs per day, 1:1 fat to carb+protein ratio, and estimates of these values. Some people benefit greatly from this less-strict approach. The medium approach is the Modified Atkins Diet for Seizures (MAD). Like the Atkins weigh loss diet, you start with an “induction” phase of 10 carbs per day for 1 month, then liberalize to 20 grams of carbs per day. Fat ratio is 2:1, generally. Values are also estimated not weighed.
When we started the diet approach, we agreed to start with the medium-level MAD diet to see if we got any results. I will describe that first month in another post, but in time we found that Nora was doing better on a higher ratio of fat to carbs + protein. When we kept it closer to 3:1, her seizures decreased. When I discussed this with the dietician, I always wanted to know what other families experienced. The dietician’s somewhat amused response was, “other MAD families don’t keep records like you do. It sounds like you could do the ketogenic diet.” I couldn’t imagine NOT keeping records. How would you know that your kid is getting only 10 carbs per day? And enough fat? We were hardly given guidance to start the diet, just a website: www.atkinsforseizures.com, a page run by parents, not medical professionals.
In addition to record keeping, we moved from pure estimation to weighing with a gram scale for our own peace of mind. And honestly, it is easier. Some foods are difficult to estimate. An online nutrition database will tell you the macronutrients in 1/4 avocado, but avocados range in size. I was not always confident in my estimates, so the gram scale became my friend, not a burden.
But I was reluctant to move to the full ketogenic diet. There were a few things that still concerned me. First and foremost, using the keto diet database sounded like a burden. Although I could see how it would ease record keeping and meal planning, it also prescribed particular brands of foods to reduce any variation in the estimates. I could not see myself buying Hormel bacon for my kid, and feeding her 12 slices per week. I strongly believe in organic and locally sourced foods for personal health and systemic food system reasons, and I expected to be able to continue to use the foods that I found most wholesome for her growing body and brain. I had been successful in estimating the carb-protein-fat breakdown of our regular foods, judging by the seizure-reduction Nora experienced, and felt that I could continue without the guidance of the official database.
It was also unclear to me if I could use recipes to deliver her food. I can get a pretty good estimate of the breakdowns in the recipes I make by using some online recipe analyzers, or doing the math myself. But if every portion is not mixed uniformly, the proportions will be off and it could violate the keto diet.
I was also skeptical about the need to calibrate every meal perfectly, weigh, scrape out every atom of food weighed, and get each atom into her body. Again, we had good results with our less exacting methods at home and I didn’t see the need to add more work for marginal difference in outcome.
After about 6 weeks of progressing from MAD to a more rigorous (but not full-blown) keto diet, we had an appointment with Nora’s doctor that specializes in the ketogenic diet. He was happy to let us continue with our current approach, considering the great results and our ability to handle the diet. Nora was almost seizure-free after a few weeks of a consistent 3:1 ratio. Because of the 3:1 ratio, he was calling it the ketogenic diet, even though Nora did not start on a hospitalized fast, we were not using their keto database, and we were not measuring and planning as rigorously as the method described by the NYT article cited above.
Therefore, I am calling our approach the modified ketogenic diet. Maybe we can get away with it because Nora’s seizure count was not so very high, but on the other hand myoclonics are a notoriously difficult epilepsy to control. We know that there are different “levels” of this diet approach that work for different people, so maybe we’ve just found the right mix for Nora. I don’t suggest that these results are generalizable. But I do think that the diet can be started with a less rigorous approach and increased if “stronger medicine” is needed. I hope that the practice eventually allows for this kind of gradual approach, because it may be much more manageable for a broader range of patients.
Finally, I would call our approach “keto-lite” because Nora is not eating anywhere near the amount of bacon suggested by the NYT article. I will describe Nora’s food choices in another post, because that is the most frequent question that I field about her “special diet,” as she calls it.
So interesting, Christy! I like the fact that you can be more flexible with your ingredients. In some ways, I am certainly restricted (must buy Brand X of Product Z), but fortunately, since I, too, love to cook, I’ve found ways to be creative. Even at 5:1 (where being exacting gets more important) and being dairy-free, egg-free, and beef-free, I found ways to make things Jade enjoys. (How awesome that our dietitian was able to add wild meats like moose and elk, that we have access to up here in the Yukon, to our ketocalculator.) That being said, now that we’re down to 4:1, I feel like I have lots of extra room to play in.
Wow, I can’t imagine doing this without dairy and eggs (see my recipe from 4/1, the April Fools edition–although a real recipe!). Does Jade have allergy issues too? We explored allergy suspicions, but I don’t think Nora has any of those issues, thankfully.
It’s wonderful that you have a flexible dietician to add wild meats. I’m really pulled between wanting to give someone else control over all of this, like the dietician, and knowing that I would hate every moment of it if I were so restricted. I’m still incredibly happy that we are able to get results with our DIY method.
Did she still get 10 g carbs on 5:1? I now feel like 10 g carbs is totally doable, we even have room to play at the end of most days. Our latest treat is to put raspberries (about 6 or 7 of them) into her bedtime Norgurt (yogurt + double cream) to deliver her Depokote. Lucky that we have a local source of unsweetened frozen raspberries here in Corvallis. They are my #1 fruit source these days for maximum weight per carb, although she will never give up her tiny slices of 10 grams of apples with her morning snack!
Hi Christy-
I’ve been following your site for a couple of months and am impressed at your creativity with recipe creation! I work on a line of products called KetoCal, which can be used in recipes within the ketogenic diet and would love to send you some samples to try in your recipes. Can you DM me so we can discuss?
Thanks!
Anne
I calculate all my own meals using the Ketocalculator. Some centres have the dietitian do all the meals, but ours does a bit of training with the parents and then hands over the reins. The dietitian can still create or modify recipes, but it didn’t take very long for me to get proficient at it and the dietitian didn’t even bother checking my recipes anymore.
Jade only gets 1,050 calories per day. We just recently increased her protein and she’s now up to a goal of 5.17 g per meal (give or take 0.2g, depending on the recipe).
I also usually try to make one of her snack protein-based. (In the ketocalculator, the snacks have the same ratio as meals, but you can make up the “1″ side of the ratio however you like, with either protein, carb, or both.) She is definitely on the short side for her age. She’s one of the oldest in her kindergarten class, but also the shortest. A small trade-off given the alternative!
Jade gets 2.33 g of carb per meal. Raspberries, strawberries, and watermelon are all great low-carb fruits, but Jade also loves to occasionally have a tiny serving of banana instead. I let her decide.
Hmmm, I assumed watermelon was out of the question but now I will look it up–thanks! That will really ease the upcoming fruit season. Watermelon is Anders’ favorite fruit (he had watermelon dreams when he was younger, talking in his sleep). I don’t want to deny either of them that treat, and now I don’t have to!
When we started with the MAD diet and not always getting consistent success, I called the dietician and was asking detailed questions about how much should be in each meal and things like that. Her response was “I don’t know because no one on the MAD diet keeps records.” I was a little astonished, then realized that the keto diet was in our future. She still never gave me guidance on a set ratio per meal, but I learned through trial and error to keep everything fairly balanced meal-by-meal. The tension between the extremes of DIY and hand holding, I guess. Looking back, they should have brought us in for the training, at least, but instead they told us to keep on keeping on. They never want to see any of my detailed food records or recipes. They only care that Nora is doing well.
I do wish we would get a little more feedback or check-in even when things are going well. Instead I feel like we only talk to them to troubleshoot acute problems.
Hi Christy,
I love your blog. I’ve been reading as much as I can over the past few days. My son was just started on MAD for his daily occipital seizures and bi-weekly complex partials (which often tip into status). We are so excited to start this therapy. However, like you, we are DIY with some guidance at this point. Our son still isn’t in ketosis as we are building up slowly. We should be on the full MAD by the end of this week. Thanks so much for doing this.
Andrea
Good luck Andrea! I think you can learn so much by doing a lot on your own, as seems to be the way with MAD, but it’s so important to have some support and guidance too. Watch out for when he gets into ketosis–you will have an unhappy kid on your hands. Nora clearly felt terrible for a few days. She would lay on the floor and moan, “toast! I want toast!” but when that state passed all was well and her energy rebounded. It’s scary and keep a close eye on him during that time, but don’t be discouraged. It is so rewarding when you start seeing some seizure control. We found that Nora had better seizure control the further we pushed her into ketosis, so always be ready to make adjustments. I think the benefit of the DIY approach is that you are in control, you are with your kid every day, and you see what helps and what doesn’t.
It’s great to hear that you are finding our blog useful. It seemed like a little contribution that we could make to the world. It’s an amazing therapy but it takes persistence and support to keep at it every meal of every day. I wish you the best and keep us updated on your son’s progress.
I’m wondering if you’ve ever considered pork rinds on this sort of a diet for snacks…
I was an an Atkins diet at one time (similar to a ketogenic diet) and we found that the high fat, no carb made it an ideal snack to munch on.
Hi,
I have just been directed to your blog and it’s wonderful to read about the success you have had for your daughter! Diet therapy has also saved our daughter who was diagnosed with Doose Syndrome in 2010. Our daughter has been on the Ketogenic diet for 2years now and also doing very well (was seizure free within 2-3wks from start).
I just wanted to respond or clarify a few points about the “full blown” keto; I believe that the the article you refer to grossly misrepresented what the diet can include.
We have never made bacon or processed foods a big part of Lilah’s diet. Our daughter continues to eat most of the healthy organic foods we have always eaten. Anything can be added to the ketocalculator so you do not need to abide by brands that are in there already. Example of her favorite meals are grilled wild Alaskan salmon(where we live) with side of broccoli, kiwi and Tillamook sharp cheddar with side of oil (in syringes). She also loves Almond flax blueberry muffins, Applegate farms nitrate free Turkey roll ups, Organic sunbutter celery sticks etc
I only mean to point this out so that folks who are new to diet therapy are aware that having your child on keto or modified keto does not have to mean giving up your way of eating and lifestyle choices. My advice for newbies is to push to have your own foods added into the calculator and get comfortable developing new meals. We never used any meals that were inputed by our dietitian. We chose to make what our child liked and what we felt was healthiest for her. Also: just because it is in the ketocalculator, doesn’t mean a food is safe for your child (some people have found this out the hard way).
Hi Ann,
I completely agree with everything you are saying, which is why I start out our story with showing the way the diet is normally portrayed, then the rest of the blog includes our story which is “modified” from that traditional story. We were told things like, “only these brands are in the ketocalculator,” etc., which is why we went our own way at the beginning. Now that we are almost a year into it, I’m putting on my “advocacy hat” to show that the diet is just what you describe. It’s just what we do too. It was interesting to be at the Charlie Foundation Symposium and see all the doctors and dieticians because they need to see families doing it the way that you and I are doing it. And it’s not so hard! I like to tell them that there is a big learning curve at the beginning, but once you get going it’s just tedious and relentless. And certainly better than daily seizures!
I also see the point of the introduction to the ketocalculator because it keeps things simple for people starting up who may not have experience cooking or a strong interest or preference about healthy foods.
I think we need a new media campaign to show the other side of the diet. I hate that picture of all the bacon, although don’t get me wrong, I do love bacon, and I get it from a family farm within 20 miles of my house!
Christy
Hi Christy! So wish I had your blog to turn to when we first began our own dietary seizure-control journey. Our daughter, now 9, was diagnosed a year ago with benign rolandic epilepsy, which is usually limited to occasional partial seizures. She typically experienced seizures as mouth numbness/facial twitching or arm twitching. In January of 2012, she experienced a tonic-clonic that went on for nearly 10 minutes before EMTs stopped it. She was hospitalized overnight and sent home with a ‘script for Trileptol. I was very concerned because of the potential liver damage from the medication, but of course also wanted to keep her seizure-free. I learned about ketogenic/modified atkins diets before she even left the hospital, but our neurologist was not at all supportive–downright discouraging in fact and I had to practically beg her for a protocol for weaning her off the medication.
We live in Portland, but couldn’t get in to OHSU to see Dr. Wray for months, and I didn’t know where else to turn, so I learned all I could from books and web sites and just got her on a whole foods, high fat diet and monitored her with KetoStix. We were able to get her off medication in July and she was seizure-free from July 1 until the Monday before Thanksgiving, when she had another lengthy tonic-clonic, which we stopped with Diazepan. She’d been doing so well that I’d been allowing her to eat apples and pears, though we’re not sure if that’s what led to the seizure. We’re now working with a naturopath, and in addition to getting back to a stricter diet again, we’re using homeopathic and herbal medicine. We just started with this new approach, I’m thrilled to finally have professional support for our efforts to keep her seizure-free without medication.
Anyway, I love your blog and am glad someone documenting their journey so others can benefit.
Chris, I am so glad to have found you too. No one should have to do this alone, and this treatment should be much more accessible. Now that Nora is doing so great, I feel like I wear 2 keto-hats: The parent doing it for my kid, and the advocate who wants to help other parents get access. Everyone should have access to the diet as easily as they have access to drugs, and no one should do it alone.
Have you had a chance to see Dr. Wray yet? Soon? He’s great and gives you the medical support that you need to do this right, but it’s the parents who know how to get it done every day. We’ve talked with him about making a keto support group at Doernbecher but we haven’t set up anything official yet. I guess out blog is the unofficial support group because he has said that he gives it to families.
I’d be happy to help you all out, meet with you if you want some guidance about doing the diet at home. I see that you’ve started on your own too, but just talking about the little things that we have learned along the way could really help you avoid some of the pitfalls and to be an emotional support. Let us know what we can do to help.
Christy
I’m a cook, so the food part hasn’t been that much of a challenge. At first, the biggest challenge for me was making the decision to ignore the medical advice of our daughter’s neurologist and do this virtually on my own. Now, we’re really struggling with the emotional piece. She feels left out because she can’t have “hot lunch” and the other foods that her classmates eat. Anyway, I’d love to see a support group for the kids themselves. We have a few friends on special diets, but none as restrictive as hers.
And I too want to shout it from the mountain tops: Try diet first! If more families were encouraged to try controlling seizures with diet as soon as they’re diagnosed, rather than after several rounds of medication, than these kids would enjoy far better health. I would like to see a more “real food” approach, too. The Keto Cookbook is a good one.
Agreed and wonderful! Let’s work together. Have you seen Dr. Wray yet? My first parent support group plan will be to make gift baskets of spatulas and other good equipment for parents. I’d love to make a simple cookbook to hand out too. Nora is a bit young for a kid support group, but I do agree that kids need each other. I try to show Nora pictures of other keto kids on her special diet. We could have a meet-up next time we come for a ketoclinic appointment at Doernbecher and share some keto treats. It helps her to share her food. I do think it would be harder with older kids. Starting her at 3 wasn’t too bad.
I will also check out your site. Karrie, Nora’s dietician, has said that she wishes all of her keto patients eat as well as Nora. I don’t think it has to be so draconian. Nora eats berries, pepper, avocado, carrots, apple…in small quantities compared to other kids, but it makes the diet so much more palatable and nutritious.
Hi Christy! I find your blog to be very informative. As I mentioned in an earlier post I have a 40 year old daughter with LGS. Often times there is a prodrome before the seizures that can last for days. In fact, after a full night and day of prodrome we are actually wanting her to have a seizure. I spoke with her neuro when she was 10 regarding the Ketogenic Diet and he was adamently against it. I am now retired and have the time and we have placed her on the MAD. I am much like you and choose to document and calculate in order to get good results. Heather has been on the diet now for 8 days and she has a moderate amount of ketones, 15. We haven’t seen any changes in the prodrome nor seizures. I would be very interested in any excel spreadsheets you have developed to help you track this process. I was also curious how you moved to the 3:1 ratio. We are currently at 2:1 but how do you know when to change? How long? I feel as though we need some extra guidance with this diet. Thanks for all your information and help.
Hi Debby,
I think Ted and I can make a template spreadsheet for you and email it with explanations. Our shorthand won’t make sense to anyone except us, so we will leave some of the standard foods so that you can get started and see how it works. It will take us a little time to get it to you, so bear with us.
Do you have a neurologist who is willing to work with you now? The thing is, everyone is different. And they say that the younger the person, the better and faster it works, so it’s hard to say how long it will take to see a difference with a 40 year old. I met a woman at the ketogenic diet conference that said her husband improved when he tried Atkins for weightloss purposes, so they were at the conference to learn more about how it could help his epilepsy. So it’s not impossible! I would stick with it for awhile and see if you see any improvement at 2:1. If you do see improvement then plateau, you might want to go with a higher ratio to see if you can get better results.
We found that the doctors and dietitians felt that the MAD was really DIY. But once you start getting to higher ratios and higher ketones, you really need medical supervision. Nora has her blood drawn regularly (less frequently now) to watch her blood acid level and other blood chemistry. So try out MAD, and get more supervision if you are seeing results.
I hope that helps. We will get back to you with the spreadsheet. We did start doing it by hand by keeping paper records, but the spreadsheet helps to plan and the gram scale helps with accuracy.
Good luck. It’s hard work, but so worth it if it helps!
Christy
Hi Christy. We are working with her neurologist and a dietitian at Wake Forest Baptist Medical Center in Winston Salem, NC. They both indicate they are seeing some very good results in adults with the MAD. You are right about the MAD as a DIY. My husband and I had created a spreadsheet of all the meal plans we have used for the past week and a half which I emailed to the dietitian just to see if we are doing things correctly. It seems as though when she entered it into the KetoCalculator we are at 1.4:1 ration rather than a 3:1 ratio. It would have been nice to have had that information at the beginning of the diet and not now. I feel as though there is too much wiggle room with the way we are administering the MAD. We really have no other options for Heather so I want to make sure I do this perfectly so we can know we gave it the absolute best chance. I would appreciate any help or advice you can offer. Thank you so much for your willingness to help.
I would suggest asking your dietician to give you a KetoCalculator password. It’s already built and all of the foods are entered properly, so your dietician can give you targets that are appropriate for Heather and you are good to go! No need to reinvent the wheel like we did–use what’s out there.
We only used our own spreadsheet because we were in so deep by the time we had access to the KetoCalculator that we didn’t want to learn a whole new system. We do have a password for Nora so we can use it to double check on foods or re-check her targets, but it’s just not what we use for day-to-day meal planning.
Are you also using a gram scale? That really make things so much more precise. It gets to be routine, so if you really want to make sure you are getting that ratio right, you have to be giving her the correct amounts of the individual foods. I think we made a lot of approximation mistakes on MAD by estimating, and Nora just needed more precision to get good seizure control.
Please keep us updated and let us know if you have other questions! Good luck!
My dd is just going on modified Atkins and we were seizure-free for the past two weeks. She had a seizure this morning and I just found your blog. Thank you so much! It is so helpful.
We have received little direction for the MADE, and I am wondering how I might gain access to the “keto calculator” you reference? Is that something I can find on my own, or do I need my dietitian to help me?
Thanks! I look forward to using some of your recipes!
Natalie
Hi Natalie. Congrats on your 2 weeks seizure free! It should just be a sample of the success if you keep it up! Don’t get discouraged by more seizures. Our doc said that increasing the ratio/strict administration of the diet is like increasing a dose of medicine, so keep an open mind if you have good success with MAD, but are still getting breakthrough seizures.
The ketocalculator is a dietician-approved and regulated online tool for tracking the ratio and total carbs, protein and fat in each meal/day. You need to get access through your dietician. As we said, we didn’t get access when we started MAD, so we ended up doing it by hand then making our own spreadsheet to keep track of everything. We just needed more detail than the “estimated” way of doing MAD, and eventually went keto because we were keeping track of everything anyway and Nora did better and better as we got more strict. So I would suggest talking to your dietician to get access to the ketocalculator if you want to be able to keep track with more detail. If you do use the ketocalculator, your dietician can add these recipes if you ask for it. They can also verify my work! Our dietican has added a few of these recipes for her other patients here and verified their nutritional information.
Best of luck to you and keep up the good work. We all know that it’s quite a daily grind, but it’s worth it.