So far we’ve talked about the history of the modified Atkins diet (MAD) and future directions, as well as what the diet basically is. In this chapter, we’ll give you the “MAD: 101,” which is what we do when we counsel our families. Lastly, we’ll talk about fine-tuning the MAD and switching from the MAD to the ketogenic diet.
In general, this is meant to be simple. If it’s not, something’s wrong! Before starting the MAD (or any diet), make sure your child doesn’t have a reason not to start a diet—your neurologist will know. Also, get a baseline fasting set of blood work, including a CBC, SMA20 (CMP), and fasting lipid profile. Appendix F lists many of these labs.
We start by telling families that carbohydrates need to be reduced to 10 grams per day (20 grams for adults). We start adolescents at 10 grams per day, but if it’s too hard after 1 week, we’ll go up to 15. For the MAD, it doesn’t matter which carbohydrates you use, although 99% of our patients naturally choose the lower glycemic index carbohydrates because you get “more bang for your buck” in terms of carbohydrates. It is also important not to go lower than 10 grams per day: There will be no additional benefit, and it will just make the diet tougher. Food records show that most parents are already within 5 grams of 10 grams/day of carbohydrate when we check—you will do a good job!
Carbohydrate-counting guides are important to show you the contents of most foods out there. In our opinion, the best one is the CalorieKing paperback, which is updated each year, includes restaurants, and is about $10 (www.calorieking.com). There are also carbohydrate-content lists of common foods available on the Internet. We list some basic foods from the Atkins books in Appendix C. After a while, you’ll get familiar with the contents of most foods your child likes, and you won’t need to refer to this book often.
Second, it is important to remember that this is a high fat diet. We will often tell families that foods should “shine” from the flash of a photograph if you take one! The meals should look similar to those on the ketogenic diet. In fact, we give recipes of ketogenic diet foods. KetoCalculator can be used; just calculate a 2:1 ratio to be safe, and double check the number of carbohydrates per day. However, this is usually not needed as meals are flexible and calories are not restricted. Eat typical ketogenic diet foods such as heavy whipping cream, oils, butter, mayonnaise, and soft cheese. On the MAD, these foods are not only ad lib in regards to amounts, but encouraged.
Calories are ad lib. However, just like on the ketogenic diet, we try not to make children gain significant weight. Hunger should not be an issue—if your child is hungry for breakfast, give more eggs! If they are hungry for lunch, give more tuna or hamburger. Just don’t forget the fat, which can be very satisfying, so it’s probably better to give more butter and oils. Protein is also ad lib, so good sources like meats, fish, and soy can be given as much as your child wants (but again, don’t give them at the expense of fats). Fluids are not only ad lib, but we push them. To date we have not seen a kidney stone in a child on the MAD, and that may be due to the extra fluids or less urinary calcium or acid. Drinks such as diet sodas and flavored waters (e.g., Fruit2O®, Aquafina Flavor Splash®, Powerade Zero®, Nestle Pure Life Natural Fruit Flavored Water®, Dasani Natural Flavored Water®, O Clear Water®) are great and really help. Artificial sweeteners are fine. Extra fluids may make the urine seem less ketotic (due to more fluid), but that’s okay.
For the first month, check urine ketones as you would on the ketogenic diet using ketostix. During the first month, they will likely be large. You might even see over-ketosis (see Chapter 7). However, in some children they can be lower (e.g., moderate) or fluctuate. In our experience, the larger the ketones the first month the better, so give lots of fat if the ketones seem to be dropping. Check them twice a week, and record them on a monthly calendar, along with seizures. In addition, we recommend checking your child’s weight weekly.
Start a low-carbohydrate multivitamin and calcium. Any tablet form is fine, as well as the sugar-free chewables (e.g., Bugs Bunny® or Scooby Doo®). This is as important as it is on the ketogenic diet. We do not use other supplements such as carnitine, selenium, or Polycitra K®, unlike the ketogenic diet in which we often do.
During the first month, we have a “tough love” approach. We do not reduce medications, but similar to the ketogenic diet, we switch to carb-free preparations. We also stick to 10 grams per day (20 grams for adults). One of our studies surprisingly found that 10 grams per day (for a child) was better than 20 grams per day for the first 3 months (we didn’t test formally switching earlier at 1 month). Try to avoid carbohydrate-free store products the first month, such as those made by Atkins and other companies. In general, they are fine, but only after the first month. Let’s see what the MAD can do by itself without any other changes.
We give families lots of recipes and ideas. However, most of the information we get is from the Internet. Recipes are available at www.atkins.com and www.myketocal.com. We also list some recipes in Chapter 23 and ideas of what meal plans may look like in Appendix E. It is sometimes easier to tell families what they can’t eat (e.g., cookies, candies, pasta, rice) than what they can. In this way, ideas for foods and recipes can be critical.
Another trick we use is to tell families to go shopping before actually starting the MAD. We often counsel families on Fridays and tell them to fill out a 3-day food record from Friday–Sunday of foods their child is eating already. This gives our dietitians a chance to see what the child’s normal intake (especially calories) is, but it also gives the family the weekend to hit the store and shop. Bring your child and let them be part of the shopping.
In 2010, we published results from a study in which we tested our theory that a higher fat version of the MAD would work better. By using KetoCal® as a supplement, parents were able to raise the average ketogenic diet ratio of the MAD from 1:1 (historically) to 1.8:1. This improved the chances of the MAD working to a remarkable 80% (from about 50% without KetoCal®). Although certainly giving more natural fat (or MCT oil) might achieve the same goal, we have found that KetoCal® is a potentially easy and palatable way to sneak in the extra fat.
The other part of this study was to see if this was only important for the first month. This also was true. As shown in other studies, after 1 month you can lighten up on the restrictions of any diet, and the KetoCal® could be stopped. About 1 in 5 children had slight worsening of seizures, but this is typical for anyone on the diet after the first month. Of course, if your child loves the KetoCal®, it can be continued.
In the study, children were given a case (6 cans) of KetoCal® 4:1 powder. This can be purchased from the company and costs about $150. We told families to get in 60 grams per day, which is 2/3 of a cup of the powder. It can be used as a milkshake (mixing with either water or Fruit2O®) or the powder can be used to cook with (recipes at www.myketocal.com). The milkshake is made by mixing 2/3 of a cup of KetoCal® with 8 ounces (240 mL) of water to make a 10-ounce shake, which is about 400 calories. Many families reported to us that the milkshakes taste better cold (made the night before) and flavored with either Fruit2O® as the liquid source, carbohydrate-free flavorings (e.g., Bickford®, Starbucks®), or sugar-free Jell-O®. The times to drink it were also up to the family—most children drank the shakes all at once, either for lunch or as an afternoon snack. The carbohydrates in KetoCal® given this way do not need to be counted toward the daily limit.
KetoCal® also comes in a pre-made liquid form now, in small cartons (“tetrapaks”) that look like juice boxes. The premade packs were not tested in our study, but there is no reason to think they won’t work as well. We would suggest one pack per day, which is pretty close to 400 calories.
After the first month, if your child doesn’t like the KetoCal® (or it’s too expensive), it definitely can be stopped without losing seizure control. The decision at this point is up to you.
Food labels are critical for any processed or prepared foods. Remember that the carbohydrate content highlighted on the front of the packaging for many low-carb products can be somewhat misleading, as not only fiber but sugar alcohols are excluded (see later for more on this). Look for the total carbohydrate amount and subtract only fiber. This is the final amount for that product. Remember portions can be your friend, too: If a candy bar has 10 grams of carbohydrate in it, you can have your child only eat half for 5 grams.
Now that you and your child have succeeded in making it to the end of the first month, things can be made less strict if the diet is helping. We do recommend making one change at a time, similar to the ketogenic diet. Each week things can be changed, very carefully, if desired.
The first change that is possible is to increase carbohydrates. Go up by 5 grams of carbohydrate/day each month if desired (e.g., to 15 grams/day for month 2 and 20 grams/day for month 3). For most children, we will not go higher than 20 grams/day and adults to 30 grams/day. Surprisingly, most children are doing well at 10 grams/day, and this switch is not usually the first one to be made.
The second change is to stop the KetoCal®. As this will lower the ratio slightly by itself, compensate by giving more fat if possible. This is a change to the MAD, so if you plan to stop the KetoCal® (as all families did in our study), count this as a change and do not increase carbs, for example, at the same time.
A third possible change is to reduce medications. We are all in favor of giving this a shot, just do it slowly and leave the MAD unchanged if you’re going to do this. If seizures worsen, consider increasing the medications back if medically indicated.
A fourth and final change is to start using low carbohydrate products. Remember to read the food labels as discussed earlier. At this point we don’t count fiber toward the carbohydrate limit, but we do count sugar alcohols (e.g., xylitol, maltitol), which can be in many candy bars and low-carb baking mixes. Another way to think of it is fiber is free. If you choose to use these products, and many of our families do, just try one new one per week to make sure it doesn’t make seizures worse. Some favorites include the Atkins candy bars, shitake mushroom noodles, low-carb chocolate milk, and baking mixes. Just the Cheese™ snacks are also a great and crunchy snack.
You can also now be less strict about checking ketones. Our studies have shown that it is natural and normal on the MAD to have large ketosis in the first month but moderate (or trace) ketosis by the sixth month. In most of these children, they were still doing great, or even better. Keep track on the seizure calendar and show your neurologist. We recommend once weekly ketones on the MAD after the first month.
After 1 month (or definitely by 3 months) you should be touching base with your neurologist and dietitian. By this point, you should have a good sense if the MAD is helping. If it is, then we recommend filling out a new 3-day food record (now that your child is on the MAD) and rechecking the labs you did before starting the MAD. These results should be compared, especially the total cholesterol and triglycerides. If they are too high, then adjustments to the types of fat may need to be made. Your child should also be seen by the dietitian to check his/her weight and height and answer your questions. Although side effects appear to be less frequent with the MAD compared to the ketogenic diet, they still can occur and need to be looked out for.
Unlike the ketogenic diet, there are fewer specific changes that a dietitian can make to the MAD if things are either not going well from the start, or seizure control is lost. This can definitely be a disadvantage to the MAD, but there are some changes that can be made that we have found helpful. Of course, the ultimate fine-tuning change is to switch to the ketogenic diet, but that is not usually necessary. More details on that switch are in the next section.
Usually the first thing we do is look at the seizure calendar and see if ketones are high and also if they correlate to seizure control. If there is a correlation and ketones are low, we’ll look at a 3-day food record and make sure enough fat is being given. We might also add extra fat sources such as MCT oil or KetoCal® (assuming the latter has been stopped after the first month by the parent). Carnitine has also been helpful for some of our patients. One of the most common mistakes made by parents is to make the MAD a high-protein rather than a high-fat diet.
Secondly, we’ll double check the 3-day food record to look at calories. Some children may be eating much less than before the MAD started, and we’ll recommend more calories for more fuel, and then more ketones. Surprisingly, others may be eating too many calories. We’ve recommended to families to take the same foods they’ve been giving and reduce them by a quarter or third (because we don’t strictly calculate calories). Just make sure the calories reduced are protein, not fat.
Lastly, we’ll make sure medications are not playing a role (either too little or too much), as discussed in Chapter 12 and Appendix A. Look for hidden carbohydrates too.
This is a tough decision. Lots of studies suggest that you can switch your child from the traditional ketogenic diet to the MAD after months or years without loss of seizure control. In fact, this was how we realized this diet worked. Studies show that diets do not need to be so strict after the initial month or two. However, some children can have more seizures with the MAD, similar to those who have more seizures when the ratio is lowered. Just make sure to do this with your neurologist and dietitian’s permission. We usually recommend continuing the multivitamin and calcium but stopping the Polycitra K when you switch to the MAD.
What about the reverse? Going from the MAD to the ketogenic diet? This is an even tougher decision. Most families come to us for the MAD, as they don’t want to weigh and measure foods, be admitted, and be able to order out at restaurants. The ketogenic diet is a higher level of work for sure. A recent study from our center in combination with those in Germany, South Korea, and Denmark found that 37% of children who make the switch will have at least a 10% improvement in seizures. Only a few became seizure free, though; interestingly, it was those with Doose syndrome. No child who didn’t improve with the MAD then improved at all with the ketogenic diet, although since this study, we have heard of children improving at other hospitals.
What does this tell us about both diets? It suggests that these diets are more alike than different, and the ketogenic diet is probably just a “higher dose” of dietary therapy than the MAD. It also tells us that although the MAD is often excellent for Doose syndrome, if your child is not seizure free after about 6 months, you may want to strongly consider switching to the ketogenic diet.
Discontinuing the modified Atkins diet
In general, we slowly taper the diet until ketones are lost, similar to the ketogenic diet. Go up by 10 grams of carbohydrate per day every 2 weeks until your child reaches 60 grams/day. If seizures worsen, pause and let your neurologist and dietitian know. Once most children reach 60 grams/day they will start to see periods with no ketosis in the urine. Be careful as the MAD may still be working—this is not that different at this point than the low-glycemic index treatment. We’ll then tell families to make big substitutions of protein sources for fat (e.g., more tuna than mayonnaise, and more egg than butter/oil as opposed to vice versa).
After 2 weeks of this, you can start switching daily meals each week, one at a time, for more “regular” meals. For example, for 1 week, give a lunch with bread, lots of fruit, and not high fat or protein. The next week, give both lunch and breakfast this way. The third and final week, your child will be off the diet. Most families will wait to give high sugar snacks (e.g., cookies, chocolate, pasta) until this point. Some may never give these snacks again!
1. Do I need a dietitian or neurologist?
Yes. Preferably both, but at least one. This is a medical diet and needs supervision for side effects, efficacy, medication adjustment, weight gain and health, and so forth. We have received many emails from families who have started the diet on their own: Some have done well, but many have not. Even the ones who have done well usually have many questions that should be answered by a ketoteam.
2. Do I have to use KetoCal®?
Definitely not. However, it’s a nice, convenient way to get the extra fat in during the first month of the MAD. You can use MCT oil, heavy whipping cream, or other sources of fat instead if you want.
3. What materials do I need to start the MAD?
This book is a great start. There’s also good information on the Internet, including recipes. Many centers also provide printed materials including recipes, seizure calendars, blank food records. In addition, a carb-counting guide (e.g., CalorieKing) can be very helpful.
4. How long before I know if it’s helping?
Similar to the ketogenic diet, usually the MAD works quickly—within 2–4 weeks. However, a lot depends upon the seizure frequency when you start. For example, if seizures are every 2 months, you may need 6–9 months to know if there has been a true decrease. We usually tell families to give the MAD (or Ketogenic diet) 3–6 months.
5. How often should I check labs?
Probably at 3 months and 6 months, then every 6 months after that.