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:
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?