Does the Ketogenic Diet for Epilepsy Work?
Our families tried the ketogenic diet to treat our children’s epilepsies because medications were not working, and we stuck with it because the diet worked. It is an effective treatment for many epilepsy types, such as Jaron’s Doose Syndrome, and can be effective for epilepsy with an unknown cause, such as Nora’s.
Typically, a neurologist will recommend anti-seizure medication as a first treatment, but up to 30% of epileptics will not respond to medication and many have difficult side effects. If two medications fail, a diet treatment is more likely to be effective than a third drug trial.
Neurologists have recently stressed the importance of quickly finding an effective treatment in childhood epilepsy because children have the best chance of recovering if seizures are controlled early. Studies have show that regardless of age or seizure type, about 1/3 of the patients that try the ketogenic diet will see a 90% reduction in their seizure frequency, some (like Nora and Jaron) will become seizure free (Henderson et al., 2006). (See Recommendations of the International Ketogenic Diet Study Group, 2008).
We have the scientific evidence and the clinical procedure for administering diet therapy. Ketogenic diets must be used under the supervision of a neurologist and/or dietician. Your child’s neurologist can help you decide if your child is a good candidate for diet therapy. Generally, if two anti-seizure medications have not worked and blood tests show that your child can process fat properly, your child is a good candidate for diet therapy. Some types of epilepsy also respond particularly well to the diet, so the diet should be the first choice of treatment in those cases. A hospital with a ketogenic diet program is a critical support in doing the diet right. We are thankful that Doernbecher Pediatric Neurology brought in Dr. Wray to handle the ketogenic diet program just when Nora needed to try the diet. She was one of his first patients, and the program was up and running when Jaron needed the diet.
Parent’s Role in Ketogenic Diet Treatment
Parents and children are key team players in dietary treatment for epilepsy. Before dealing with Nora’s epilepsy, I treated doctors as the experts and looked to them for answers. But epilepsy treatment isn’t so straightforward. As a parent, you have choices about your child’s epilepsy treatment. Every person’s epilepsy is unique and you know your child the best. In consultation with your child’s doctor, you must weigh the benefits and risks of every treatment. You will also weigh the burden of seizures and the burden of treatment options.
Your child’s medical team can give you the basic rules of the diet, and there are materials at The Charlie Foundation that explain the ratio and carbohydrate limits (see their FAQ page.). Your child’s dietician will do the calculations, may give you access to The Keto Calculator, an online meal planning tool, and basic recipes to get started. But taking the ketogenic diet home isn’t easy. Many parents feel discouraged from trying diet therapy because neurologists and others depict it as “too hard.” We were told by one neurologist that the diet “works great for kids on feeding tubes,” but it would be too hard for a regular kid like Nora. Mainstream news articles emphasized the difficulty and sacrifice, such as the 2010 NYT Magazine article, “Epilepsy’s Big Fat Miracle.”
However, the response I have heard from all of the keto parents I have talked to is this:
If you think the ketogenic diet is hard, try watching your child have seizures.
Thankfully, adding the Ketogenic Diet Program at at Doernbecher changed the attitude by the time Jaron needed the diet. When they diagnosed him with Doose syndrome, Amanda and Jason were given the diet as a first choice and they started the diet immediately.
If you are able to try the ketogenic diet for several months and see a reduction in seizures, it is a wonderful and motivating relief to see your child doing better.
But there are some hurdles to giving the diet a good trial at home. You have to be prepared to spend a lot of time in the kitchen and learning the meal preparation methods. Most importantly, your child has to eat all of the food you prepare in order to get the benefit of the diet. But you don’t have to do it all alone. Advice and support from other parents is a critical part of epilepsy treatment.
In our experience, the ketogenic diet can be customized to meet every family’s twin goals of seizure reduction and quality of life. Some people tell us that we are “special” because we can administer this diet, other parent tell us that they could “never do it,” but I do not agree. I think any parent who sees benefits from the ketogenic diet can do it, but each family is unique and requires different kinds of support. Doctors, dieticians and parents are a powerful team to help our kids grow up healthy and strong, and we all have a unique role to play in epilepsy treatment.
How we customized the ketogenic diet at home: Nora’s story
My goal here to to describe our “modified” version of the ketogenic diet that has given Nora freedom from seizures. Your doctor and dietician can give you the training and nutritional targets to hit, but I strongly believe that you have to figure out how to fit the diet to your child’s needs and tastes to keep it up for the long haul. The goal is to achieve at least 2 years of seizure freedom before withdrawing therapy, but it can take many months of diet treatment to even achieve seizure freedom. If diet therapy is right for your child, it can do amazing things if you are in it for the long haul and make it a part of your daily routine. It is very hard at first, but it gets easier.
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; 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 attention to detail. But if one mother had to give up a career to feed her kid, did I really want to do this?
The article gives you a good description of the traditional ketogenic diet: 4 grams of fat for every 1 gram of carb + protein. No more than 10 grams of carbs per day. Calculating, following meal plans and weighing food on a gram scale to meet the carb/protein/fat requirements. 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. A hospital stay to initiate the diet with a fast and monitoring. And not to be overlooked, making sure your child happily eats all of their carefully-prepared food at every meal.
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 rather than weighing food. 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. These are all general targets to guide treatment, not set in stone.
When we started the diet approach, we agreed to start with the medium-level MAD diet to see if we got any results. 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, we found weighing 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 traditional ketogenic diet. We were having very good success with our own methods at home, and learning the official database required more time and effort invested. I was confident that we could continue to use our own methods and our own food choices. Our family was already eating whole, organic foods, and wanted to continue to use the foods that I found most wholesome for Nora’s 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.
We continued to use our own methods of calculating, weighing and serving foods with the guidance of Nora’s dietician. We moved her to a consistent 3:1 ratio, kept the ratio consistent for each meal and spread her carbs evenly over the day. We were using a more rigorous (but not the full traditional) keto diet. At our next appointment with Dr. Wray, who specializes in the ketogenic diet at Doernbecher Pediatric Neurology, he agreed 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 called 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 there is increasing evidence that the diet can be started with a less rigorous approach and increased if “stronger medicine” is needed. I hope that doctors will allow this kind of gradual approach, because it may be much more manageable for a broader range of patients.
For examples of the kinds of foods that keto kids eat on a regular basis, see What Do Keto Kids Eat?
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.
Hi again. We have been accepted on to the ketogenic team… but now i’m not sure weekday to do. My son is about 18 kilo’s. They are recommending a 3:1 ratio.we have been doing 3:1 with moderate but not complete control. I’m happy the ratio is going up, the only reason I didn’t raise it to begin with was because we didn’t have medical supervision at that point. Now the dietician is saying 3 meals, 2 snacks. Each meal 26g fat, 6.33g protein, 1.13g carb.. Snack 14.79 g fat (she did not specify how much protein and carbs, assuming its the same ratio… (and I haven’t done that math yet) that would be a total of 24.39g of protein and about 4 g of carbs a.d. day. Right now he has been getting about 40 to 50 g of protein and less than 10 g of carbs. I guess I have to come down in proteinin order to effectively up the ratio, but that is a lot less carbohydrates than I expected. I am tempted to increase the ratio, keep trying to bring the protein down n bit by bit, but keep the carbs at about 9 b.c. what do you thunk?
Also, I recently saw a news program on the hordes of kids in Europe especially, but there are some in the States and Canada who have developed narcolepsy with cataplexy because of the h1n1 vaccine. My son hasn’t really been diagnosed with a specific type of seizure disorder and so far he only has head drops, with a shoulder shrug often (but not always) after he eats. Although that’s not the exact definition of cataplexy (loss of muscle tone usually related to an emotional trigger) I have read that people have a variety of triggers and that for very young Children sometimes it will start with cataplexy only and that the excessive daytime sleepiness may show up as irritability instead. Also for a little while he complained of having a nightmare where writhing went in fast forward.. And that it continued during the day
Sorry for the long comments. Does anybody have any experience with narcolepsy or cataplexy, or have kids with these kinds of ‘seizures’. I have read that narcolepsy on children often gets misdiagnosed and can take many years to get the right diagnosis, because out doesn’t act exactly like teen onset our adult onset narcolepsy. The cases that are being reported as being related to h1n1 are quite severe, but I still think there may be milder versions out there as well. Interestingly enough I have read that the ketogenic diet may also be effective in treating narcolepsy.
Anja,
We do not have any experience with narcolepsy or cataplexy, nor do I know of any other keto kids with that diagnosis. I’ll let you know if we come across any. I also caution you against jumping to any conclusions about links to vaccines. For kids that are facing complex seizure disorders or other health problems, it can be too easy to mistakenly find causal relationships that are not there (i.e., confirmation bias.) The best thing you can do is keep records of anything you feel may be linked to your child’s wellness, so that you have data and observations to refer to.
Congratulations on getting official keto care! And good luck with the transition to a higher ratio. I think there is a good chance your son will continue to improve.
Best wishes,
Ted
An update.. We had 27 glorious days seizure free..and are now experiencing the dreaded breakthrough seizure. We decided to do a small fast.. And then get back at it.. more carefully. I feel like I let my guard down and got a but too comfortable. Trying to stay positive.. But today I had the urge to throw my plate after my lunch.. Lol… That was a bit concerning.
We had been giving a bit more protein.. Hence more calories.. Also a drink called zevia which has erythritol in it.. As well as small amounts of banana. I’m not sure where we went wrong.. But we must have somewhere. Wee are bit weaning off medication.. Since he wasn’t on any. The last time we saw the neurologist she said pseudo Lennox (atypical benign partial epilepsy)
Hi Anja,
I’m sorry to hear that, but keep going. We had similar setbacks. There were things I thought would be ok, like some of the alternative sweeteners, but when we tried them we also saw some breakthrough seizures. Of course we can’t say if it was a perfect cause-and-effect relationship, but it seems to be a common experience. I would encourage you to stay really vigilant and careful for several months of seizure freedom before trying new things again. Especially sticking with whole foods as much as possible. I know exactly how you feel and have been through to the other side, so stay strong!
Christy
Sorry.. That should read.. ‘we are not weaning off
medication
I was just seeking this information for a while. After 6 hours of continuous Googleing, finally I got it in your website. I wonder what is the Google’s issue that doesn’t rank this type of informative websites closer to the top. Normally the top websites are full of garbage.
I’m emailing today to share a great resource for parents with children who are dealing with Epilepsy. This guide to the Ketogenic diet which is used to control epilepsy in children was put together by the treatment specialists at Ann and Robert H. Lurie Children’s Hospital of Chicago. They have written and illustrated this wonderful guide (https://www.luriechildrens.org/en-us/care-services/specialties-services/epilepsy/programs/Pages/ketogenic-diet.aspx) that illustrates how the Ketogenic diet works and how it can benefit children with epilepsy. I was wondering if you might be interested in sharing this guide with your audience? I think your audience might be intrigued with the findings and the information presented. I would be more than happy to include a write-up that would summarize the information to share with your audience if you would like. Please follow up with me if this is something you might be interested in sharing with your audience. Thanks for your time and have a wonderful day!
Christy / Ted,
Thank you do much for your fantastic resource, I found it whilst looking for supplement disguise tips and love your nut ball method.
Our daughter is nearly 2 and had been diagnosed with febrile seizures starting at 6 months but last week was diagnosed with generalised epilepsy, although that could be a temporary diagnosis whilst they monitor her.
She has not been prescribed any meds as yet, but we typically have to give recovery meds ie diazepam fortnightly. We discussed the ketogenic with the neurologist and was told that we would expect a long wait and would not be a priority without her failing meds first.
We’re keen to try diet first and are trying to read up as much as possible. I’m quite hopeful that we can pull the diet off due to her age, her small snd varied appetite and our willingness to prepare different foods. The aspects that most worriy me at this stage are the weighing and precision, understanding food ratios snd portions and monitoring her ketones, weight and general health.
What a horrible time this is wondering what the future holds for her and how the condition will manifest. Yours is the first blog that gave me hope that a normal family with healthy food attitude can thrive alongside Keto. Big thanks and regards to Nora.
Ps. Any basic tools / guides that you recommend would be great.
Claire,
Thank you for your thoughtful comment.
First, hang in there. You may be in a for a bit of a rough ride, but you’ll make it through. It seems when toddlers start presenting an epilepsy, especially a difficult one, it takes some time for everyone to scramble and find a workable solution and adjust to the new normal. It can be extremely stressful, so don’t be hard on yourself and know you are not alone. Seeing Nora struggle with this monster and all of its uncertainty was/is one of the hardest things I’ve ever dealt with personally, but kids are tough. Keep going with love, patience, and hard work.
Second, about the ketogenic diet, Christy and I feel it should not be relegated to being a last resort. We feel that the diet is probably the very best treatment for some types of epilepsies, and in those cases, should be tried first. And indeed it is now recommended as the primary therapy for epilepsies such as Doose, but it’s probably the best primary treatment for an even wider range. However, I think there are some epilepsies that pharmaceuticals may be best for. And there are some epilepsies that surgery is best for. You’ll have to have the discussion with your doctor. Different doctors have different attitudes about the diet. But make your decision about the diet based on what you and your doctor think is the best treatment for your daughter, NOT on whether or not the diet is too “hard.” While making changes to your and your daughter’s diet and the routines around meal preparation (i.e., calculating and weighing) is definitely a change, it’s a manageable one — you can learn it quickly — and it is easily worth it if it controls your daughter’s epilepsy. Do not accept “it’s too hard” as a valid reason for not trying the diet. Make your decision based on an understanding of the efficacy vs. side effects for all of your options.
Third, do not do the full ketogenic diet on your own. You’ll need medical support to manage any complications, such as blood acidosis, constipation, kidney stones, and the various supplementations. However, you can safely do “lighter” versions of the diet at home, such as the low-glycemic index diet, and the modified Atkins diet. In fact, we gradually transitioned Nora into the full ketogenic diet with these lighter diets first. Keep in mind though that the ketogenic diet is the strongest “medicine” so to speak — and has the most side effects — so even if you do not see much improvement in seizures at a low ratio (fat:carbs+protein), it does not mean a higher ratio will not work. Make sure your doctor knows if you are going to do MAD though, because it may affect their decisions on medications, and they may first want to check if there are metabolic conditions that contra-indicate a high-fat diet for your daughter.
But know that if you are going to do the diet, you have to commit to it. You can’t do it half-way. There is no cheating, and not “just this one piece of candy.” Just like with a medication, you have to apply it consistently and rigorously to determine if it works.
Lastly, for resources I recommend the book “Modified Atkins for Seizures” by Michael Koski.
http://www.atkinsforseizures.com/atkins-for-seizures-ebook.html
I found it to be a very useful resource, and also has some very helpful perspective for the stress felt by the caregivers.
You can also Google “Kossoff” and “Modified Atkins” and you’ll find many resources on the MAD diet.
Hang in there and good luck!
Hi there! Dr. W gave me this web address at our initial keto consultation appt. We have been working our way into the MAD for about a month. I’m so glad I visited this blog. I’ve been tweaking and personalizing this diet in much the same way as you did. In fact, after a big brainstorming session, my husband and I realized what we are doing is so close to 3:1, and that actually aiming for a 3:1 would allow for more than 10g of carbs! Woohoo! So I suppose we will be doing modified keto as well. I called it “outsmarting the MAD” 🙂 We have been just counting carbs, working our way to 10, currently at 15, but doing major analysis of Ramona’s daily eats, I found she’s getting plenty of fat, more than enough protein, and that if we lowered that protein a tad, she could meet her daily protein needs, keep the fat where it’s at, and could bump up to 20g carbs and be 3:1. Out plan is 20g carbs, 30g protein, 150g fat. Our meal and snack repertoire needs to be adjusted a bit, but I have a good feeling about this. Ramona’s been ketotic for 2 weeks, doing amazing, but I feel like it could be better and actually easier to use the ratio. We plan to weigh and measure, depending, but not force her to eat every last drop. Anyway, I’m so glad Dr. W was receptive to your modified Modified approach. We shall how things go with ours. Would love to chat more sometime!
Hi Caitlin–congratulations on your success! Dr. Wray is so great about giving parents the freedom to find what works, both controlling seizures and living life with the diet. I am thankful for the way we started the diet too because it let us know exactly how strict we had to be with the diet to get results.
I’m happy to talk if you need anything. We are in the process of setting up a support network for families using any form of diet therapy, but we are always here to talk and trouble shoot.
Christy
Christy –
I’m an adult with seizures who is going on either the MAD or the LGI diet. I was hoping to get a copy of your spreadsheet, because as someone who lives in Eugene, I’m guessing your local foods are my local foods.
Julie
Hi Julie,
If you are doing LGIT or MAD, you don’t really need a spreadsheet. We were doing LGIT first, then MAD, without a spreadsheet for a long time, only when we started to get more strict did Ted put some foods into a spreadsheet so that we could start keeping closer track. It’s also kind of turned into a beast that we know how to use, but I don’t think is very user-friendly for anyone else.
I would suggest using http://caloriecount.about.com/. It has a huge database of all kinds of foods, both brand-names and generic like avocados, apples, etc. It’s what I use when I want to put something new into our spreadsheet, like brussel sprouts or something that we haven’t fed Nora before. I also use it to create recipes (it’s where the nutrition fact panels on our site comes from). You can set up your own account and track your meals, so you can keep track of what you are eating and the nutritional breakdown. You can also enter brands or other foods that have a nutritional label on them if there is a local brand that you want to use that is not in their database yet. There is an app too, if that is useful to you. I started using it for Nora back in the day too, but also wrote everything in notebooks to keep a record.
Good luck, I hope diet is helpful for you. Ted and I have shifted to a more LGIT/MAD diet since Nora started her diet, and we feel much healthier overall (although didn’t have epilepsy). We don’t use any meal tracking for ourselves, just making low-carb, no-sugar choices and getting more protein and fat than we used to. Avocados, berries and macadamia nuts (or any nuts) will be wonderful for you!
Christy
hi how are you i hope you guys are doing great. i have a question my son started the MAD 3 weeks ago i still don’t understand very well the ration and ketosis stage, but the seizures stopped right after i started the diet so it;s being almost three weeks seizure free, although im not so sure about that or maybe I’m doing something wrong because he’s still having auras so if you can pls give me an advice of what can i change or add plus he’s not satisfied with the food he’s always hungry it is wrong if i give him more food through the day but obviously checking the carbs if you can e-mail me, it will be perfect and i wanted to let you know that he’s not in any meds just the diet for some reason my husband and i always thought that they were not doing so good because every time he started and new one he’ll get a little worse so we decided to stopped it i just want to learn the right way to do this diet i’m so confident that it’s working thanks for your posts it is a lots of help
Hi Sandy,
I’m happy to hear that your son is doing well on MAD, it’s much less restrictive than the ketogenic diet and easier for you in a lot of ways. But it is harder too because you are just approximating portions, so if something is a little bit wrong it is harder for you to know what went wrong.
It’s a huge relief to know that it is working! Now you just need to make adjustments. I’m not a doctor so I can’t tell you what exactly it means if he is still having auras. I know that with Nora, she did better on MAD but was not seizure free, so the doctor and dietitians agreed that increasing the fat she gets is like increasing the “dose” of the diet, like increasing a dose of medicine. That would be my suggestion. Adding some coconut oil to his diet, maybe 1 tsp 2 or 3 times a day with meals, could help to strengthen ketosis. We did that to help Nora when she was still getting into ketosis and keeping her there. In our experience the body just needs time to adjust too, and the longer you do it the easier it is for the body to handle.
As I understand it, MAD is not calorie restricted, so you can give him more food as long as you are not going over the carb limit. Adding and equal amount of protein and fat would be what you want to do. We found it was really hard to get enough protein into Nora when she was doing MAD, so I would suggest adding a little more fat. Fat has more calories per gram than protein, so a little fat goes a long way to being satisfied and helping with ketosis.
If he is not satisfied with his food, you have the flexibility to try different things with MAD. We have a few posts on how to build a simple meal: http://blogs.oregonstate.edu/modifiedketogenicdietforepilepsy/2013/12/15/quick-keto-meals/, and http://blogs.oregonstate.edu/modifiedketogenicdietforepilepsy/2012/10/18/noras-top-15-foods/. There are many great foods that can work very well. I suggest trying one or two new things at a time to see if he likes them. If you are having good success, add new foods slowly so that if something goes wrong you know what you changed and you can avoid that in the future.
Let us know if you have more questions, I hope that helps.
Christy
Your blog is great! Thanks for sharing all this! We are about to start our modified atkins/keto journey after 6 failed meds and brain surgery, and I hope to document it too. 🙂 I am very much like you-We eat whole foods, organic, local-I just cannot buy smithfield or that ketocal! So yes, that is why I am excited about the MAD as it will allow me to use what we normally buy or grow. 🙂 We have our first appointment 7/16 to start MAD-I am going to discuss a higher ratio of MAD with the dietician as it seems very doable to me-in logging our food, I am already finding getting to a 2:1 or 3:1 ratio will not be hard for us. 🙂
Hi Heidi, I hope the diet is your answer! We have been able to do 3.5:1 for 2 years on whole foods, so you can easily do it too. If MAD helps but does not totally control seizures, then remember that you can go to higher ratios with whole foods if you are willing to make it happen! We found that the protein requirement for MAD was too much for Nora, she was happier to eat and had better seizure control as we went higher on the ratio, so we felt fortunate that everyone was happier all around as we increased her fat. Please keep in touch and ask any questions you may have. Stay tuned, I’m about to post a granola recipe that will be great for MAD!
Christy
Thank you! 🙂 I am happy to report that we are about 3 months in, and we have noticed a slight reduction in seizure frequency, but a HUGE reduction in seizure duration. 🙂 We have not had to use intranasal versed once we got ketones to 80. 🙂 🙂 So, going from about 5 seizures a week, down to 2-3, and then going from 5-10 min seizures down to 2-7 second seizures. 🙂 That is better than any medicine we have thrown at him in the past 2 years. 🙂 Joey could not tolerate protein either on MAD-we had to reduce his protein while also increasing his fat to get him into ketosis. So, we are currently at a 4:1 ratio, aiming for less than 50g protein daily, and no more than 15 carbs. So, very much in line with alot of your older diet recipes, which I am going to continue to peruse-tremendous resource here, thanks again! 🙂
Thanks for the update Heidi! We all love hearing success stories, and it is certainly a big improvement in quality of life to reduce seizure frequency and duration. Seems like a huge improvement. I’ll warn you that some of the older recipes were not long-time favorites and I got a lot better at making recipes as time went on, so check the comments. The granola recipe is up and Nora loves it (and so do I)!