BE CREATIVE, but follow the rules exactly.
Follow the rules exactly, but be creative.
As long as you follow the rules exactly, but think creatively, you and your child can do just about anything you ever did before the diet started.
At first, most families find that the diet is very time-consuming to plan and prepare. But it gets faster and easier as you become accustomed to using the gram scale and planning meals in advance. We have estimated that in the first weeks, shopping and meal preparation may add an extra hour or two of commitment each day. But after this initial period, once you have gotten used to weighing food, parents say that preparing the diet may add a half-hour per day at most.
The first time preparing meals takes forever. I was nervous weighing the foods and making sure that Danny would eat it, but the second time was easier. Once I learned the foods that Danny likes, I was able to prepare his foods much quicker in the kitchen.
Preparing and storing meals or parts of meals in advance can save much time. You can refrigerate many foods for a few days or freeze them for months. Following are some time-saving tips from parents who have experienced the diet:
• I cut up his favorite vegetables and keep them in plastic bags in the refrigerator for a few days. Then I can take them out and weigh a meal in no time.
• I usually make cream popsicles once a week and freeze them. He has one after every dinner.
• We measure a day or two of meals at a time and put them in containers. That way we only have to do the weighing about every other day. Also, we can either serve the meals at home or take them with us if we are eating out.
• We make sure to label each ingredient that we have weighed, like “25 g of cream for the egg and bacon meal,” this way we know exactly which meal it belongs to.
• Whenever someone is celebrating a birthday at school, I know what to make for him—I send him in with a fruit-topped ketogenic cheesecake so he can have something good to eat, too.
• I put a cream shake in a container and freeze it so he can eat it later as ice cream or let it thaw back down to a shake.
• I always keep some tuna or chicken salad and bags of cut-up vegetables stored in the refrigerator in case I can’t be there to fix dinner myself. He also takes these stored meals to school.
• We prepare grams of butter in little clear plastic cups, this way we can grab the butter and add it to his school lunch.
Be certain to label each meal or each part of a meal (Monday breakfast, Wednesday supper) before putting it in the refrigerator or the freezer so you remember what goes together.
Anything the family did before, they can still do on the diet—it will just take a little more planning. Every parent who has been through the diet has suggestions to offer:
• The key to making the diet “portable” is reusable storage containers.
• Cold food is easier to transport than hot food.
• It is easy to get food microwaved in a restaurant.
• It is usually easier to weigh and assemble a whole meal or several meals at home in advance than to weigh food on the road.
WITH BOTH OF US WORKING, and with all of the sports and church things for the other kids, finding time to make Brian’s ketogenic meals was very hard. We finally found that if his mom and I worked together on Saturday morning, we could make all the meals for the week, label them, and put them in the freezer. Then at night we only had to make the family’s supper—his was all ready to microwave.
Eggnog is the traditional replacement meal, designed for all-purpose substitution in case of travel, sickness, or emergencies that make it difficult to prepare a meal. Eggnog is a complete meal-in-one (except for vitamin supplements), which is part of what makes it so convenient. Most children like the taste. Each sip is ketogenically balanced, so they don’t have to drink all of it, or drink it all at once, to get its ketogenic effect. Also KetoCal® or KetoVolve® can always be used on the road to provide a “shake” or milk drink, if the grams of powder are weighed beforehand than all that’s required is to mix it with water. Macadamia nuts, sometimes mixed with butter to achieve a higher ratio (they are naturally 3:1), can also be used as a meal-in-a-pinch or a travel meal or snack. A bag of chopped macadamia nuts and a diet soda can be a very socially acceptable snack for older children to eat around their friends, for instance, on a field trip or sleepover.
Neither eggnog or macadamia nuts has enough protein nor the nutritional value of regular meals with meats, fruits, and vegetables. These are meant for snacks and should be used infrequently in place of meals. Both eggnog and macadamia nuts, however, can be extremely useful in a pinch.
WE CARRIED A SMALL COOLER with an ice pack in it everywhere. In the morning, we fixed the whole day’s meals before going out. It got so that even if we weren’t going anywhere we would set up all the meals for the day and stick them in Tupperware containers in the refrigerator. If we were going on a long trip, we would take about 2 days’ worth of food with us in the cooler and bring our scale. Also, we always carried extra ingredients that we knew might be hard to buy, like olives. Everyone has a microwave, even on airplanes. We could give a fancy restaurant a couple of Tupperware containers and instructions for how long to cook things, and they would bring the food out on their own plate. Everybody was really cooperative.
The following are some meal ideas for taking to school or on short outings. Each meal requires several reusable containers for storage.
• Tuna, chicken, or egg salad with mayonnaise
Fresh vegetables (cucumber, carrot, cherry tomato, celery) Sugar-free Jell-O with whipped cream
• Celery or cucumber boats stuffed with tuna salad, cream cheese and butter, or peanut butter and butter
Vanilla cream shake, whipped and frozen overnight
• Sandwich rolled in lettuce (chicken, cheese, turkey, or roast beef with mayonnaise)
Water-packed canned peaches
Chocolate milk (cream diluted with water and flavored with pure chocolate extract and saccharin)
• Cottage cheese with chopped fruit or vegetables and mayonnaise
Cream shake, whipped and frozen overnight
• Fruit-topped “cheesecake,” frozen overnight: a one-dish meal
• Soups in a thermos of chicken or beef, cream, butter, and vegetables
• Mac & cheese (Miracle Noodles) cheddar cheese, butter, and cream
• Greek salad with feta cheese, olives, and olive oil
Foods frozen overnight and taken out in the morning soften to a pudding-like consistency by lunchtime. Foods to be taken to school or on short outings can be wrapped in foil or carried in a thermal pouch or cooler for extra insulation to help stay either warm or cold. Whipped cream can be stored for a few hours and still keep its body.
When we went to Disneyland we just took a big cooler with 3 whole days of meals in labeled containers. Once we let him get a hot dog from the stand (which we then weighed) so he could feel like he was having a special treat. I wouldn’t say it was easy doing all that planning, but for us it wasn’t too difficult.
If you are going out to eat at a restaurant and you want your child to have a hot meal, call first to make sure the restaurant has a microwave that can be used for heating your food. If you are giving the child a cold meal, ask the restaurant to bring out an extra plate, which will make the food look nice and add to the feeling of family togetherness. Most restaurants are very familiar with allergies and special diets. Many of them have heard of the Atkins diet, so use that to your advantage if they don’t know what the ketogenic diet is. Their goal is to make you feel comfortable while eating in their restaurant, so if you call the restaurant ahead of time or if you speak to the Maître d’, usually they will be able to prepare a plain piece of chicken breast or scrambled egg, and then you weigh out the food at the table.
One mother kept her child out of school for a year and hired an in home teacher because she did not want him to be tempted by seeing other children eat. Another family stopped going out entirely—no more McDonald’s, no more Sunday dinners at Grandma’s—until the child himself finally begged them, explaining that he would enjoy the atmosphere and would not be too tempted by the food. Another mother fed her child earlier and in another room so he “wouldn’t feel different” from his siblings. We believe it is better to aim for inclusiveness, for living as normally as possible given the diet’s restrictions. In our experience most children are able to participate in making the diet as much as possible a part of a normal, enjoyable life.
It may be difficult for a child who is sick to maintain ketosis. Sick children often do not feel like eating. Their activity level changes, and they don’t burn as many calories when they are ill. For these and other reasons many children on the diet experience a decrease in their urine ketone levels when sick. Seizure activity may increase at these times, or breakthrough seizures may occur even in children who have been well controlled on the diet. Parents should rest assured that ketosis will become reestablished as the illness resolves. But seizures during illness are not solely due to a decrease in ketosis. For reasons that are not understood, children who have seizures and have never been on the diet are often more likely to have a seizure during their illness. It may be necessary to break ketosis in order to treat an illness effectively. The most important thing is to get your child well again. The diet can be resumed once your child is well. The following are general guidelines for caring for a sick child on the ketogenic diet. More information on other side effects of the diet is provided in more detail in Chapter 14.
After about 3 months on the diet we noticed my son was sleepy, refusing to eat, and fussy. He doesn’t speak, so we couldn’t ask what was wrong. His ketones were 80 and he didn’t seem dehydrated. We thought maybe the ratio was too high or calories needed adjusting? After a few days, we contacted our keto doctor who didn’t think it had anything to do with the diet and suggested seeing our pediatrician. Fortunately, she figured out that he had an infected tooth and gums!
As seen in this example, it is important to remember that your child is still a child and can get sick. Not all problems while your child is on the diet are due to the diet!
• Give only sugar-free clear liquids. Do not worry about restricting fluids. Offer them as frequently as tolerated.
• If vomiting lasts for more than 24 hours, use unflavored Pedialyte® to maintain electrolytes. Use for up to 24 hours (but not longer).
• When vomiting stops, you can introduce a 1/3 quantity eggnog meal. Each sip has the proper ketogenic ratio, and it is not necessary for your child to finish the eggnog if he or she does not want to. Increase as tolerated until the child is eating the full diet quantity, then resume regular menus.
• If your child becomes dehydrated and IV fluids are required, make sure that they are sugar-free (normal saline, no dextrose). Physicians and nurses in emergency rooms are not thinking about the effects that glucose in the IV might have on the diet and on the child’s seizures. If blood glucose is below 40 mg/dl, a single bolus of glucose (1 gram per kilogram of body weight) may be given.
• If your child is using MCT oil in the diet, discontinue it until the illness is resolved. Substitute 1 gram canola or corn oil for each gram of MCT oil. The MCT oil can be resumed when your child is well.
• Give sugar-free fever-reducing medicine. Acetaminophen suppositories are an excellent fever reducer that won’t interfere with the diet.
• Offer sugar-free liquids without restriction while your child has a fever.
• If an antibiotic is needed, make sure it is sugar-free and sorbitol-free. Speak with your pediatrician about using injectable antibiotics when possible, as a 7- to 10-day course of oral antibiotics may interfere with ketosis.
Sometimes a change in the diet or illness can cause children to get into too much ketosis. Some signs of too much ketosis are:
• Rapid, panting (Kussmaul) breathing
• Irritability
• Increased heart rate
• Facial flushing
• Unusual fatigue or lethargy
• Vomiting
If you suspect your child may be in too much ketosis, give 2 tablespoons of orange juice. If the symptoms persist 20 minutes after giving the juice, give a second dose of 2 tablespoons orange juice. If the second dose of juice does not improve your child’s condition, call your pediatrician and the supervising physician of your child’s ketogenic diet immediately.
If you cannot reach the doctors, take your child to the emergency room. The emergency room doctors will check how acidotic your child has become. Intravenous fluids may be needed or even a dose of IV glucose to break up the excessive ketosis. In the meantime, ask the emergency room to continue trying to contact your ketoteam.
In most households, the person who usually prepares the meals is occasionally unavailable—working late, sick, at a party, or otherwise engaged. Not to worry! With a little planning, someone else can easily put a meal together from your prepared ingredients. Many parents store measured ingredients or prepared food a couple of days ahead of time in the refrigerator even when they are planning to be present to prepare each meal. The habit of preparing meals in advance both saves time on a routine basis and makes it easier to cope with special situations. Just like with nonketogenic meals, it rarely hurts to have something ready in the freezer.
Yes, the family can take vacations. Longer trips by necessity involve more planning than shorter ones. Many families who take long vacations choose to stay in places where they can cook, such as friends’ condominiums or motels with kitchenettes, rather than in hotels. They sometimes take eggnog for the road instead of a solid meal. They take their scale and call ahead to make sure that places where they will be staying have heavy cream and a microwave available. With the scale, they can order grilled chicken, steamed vegetables, and mayonnaise and create a quick meal right at the restaurant.
Families take coolers full of prepared ingredients for the first couple of days of a trip, and perhaps staples such as artificial sweetener and mayonnaise. If they are staying in a hotel with no kitchen, they might take a camping stove to cook on. They take a lot of storage containers and the calcium and multivitamin supplements, too, of course—they never forget those.
Apart from the nuisance of planning, the diet should be no obstacle to family fun. There is no reason why a child should not live a rich, full, and healthy life while on the ketogenic diet. There is no reason to deprive yourself or the rest of the family.
HE SKIED THIS YEAR FOR THE FIRST TIME in ages. He skied like you wouldn’t believe. He’s swimming, he’s playing ball. He’s definitely had a happier life on the diet.
Being creative can mean compensating for a small quantity of cucumbers and carrots by slicing them in tall, thin strips and fanning them out to cover more plate space. Using smaller plates can also make the food seem like more. It can mean dressing up the cream as a toasted almond ice cream—whip into a mound, flavor with almond extract and sweetener, and sprinkle with a crushed almond. Let the child sprinkle on the nuts for fun.
There are lots of calorie-free ways to keep the food lively. Play with variables that add interest, not calories:
• Shapes (molds and cookie cutters can help here)
• Natural food colors or food coloring
• Herbs and spices (just a tiny pinch because these have carbohydrates)
• Pure flavoring extracts
• Pretending
Of course, many children do not care about variety and whimsy in their food. Some children are comforted by regularity. We have seen many families cook the same six meals over and over for 2 years, and the children were perfectly content.
WE FREEZE HIS DIET DECAFFEINATED POP in miniature ice cube trays. They make refreshing little treats. He has a small amount as a goodie before bedtime. We give it to him in a wine glass to make it fancy and special. We also make popsicles out of his pop. If it’s clear pop, we let him mix in food coloring drops, so he is not only involved but also learning. This adds lots of laughs when his teeth and lips turn green or blue or purple.
Peaches can be swapped for strawberries, broccoli for spinach. Combine fruits or vegetables for variety—peaches with a couple of raspberries on top, or asparagus with carrots. Switching the foods around helps add variety to the meals. If a child wants variety, there’s plenty of room for creativity within the diet.
HE HAS HIS SPECIAL “PIZZA.” It’s just cheese and ground beef melted on a thin slice of tomato, cut into triangles the shape of pizza slices. But he loves it. It’s pizza to him!
If the recipes and quantities as prescribed by a dietitian are followed exactly, the family will know the child was given the best possible chance to obtain the maximum benefits of the diet. Being very strict helps the ketoteam know where a child stands with the diet and minimizes any confounding factors. The effect of the ketogenic diet is directly related to the food that is eaten. This may seem obvious, but it is the factor that makes the diet work.
Especially when using commercial products, knowing the precise content of the food is essential. Buy the exact brand specified by the dietitian. The same product, such as bologna, made by different manufacturers may have very different proportions of protein, fat, and carbohydrates. The dietitian will have based diet calculations on the proportions of a given brand, so if a new brand is used, the calculations may have to be changed.
If a different brand needs to be introduced, the parents or dietitian must research the product carefully, even if it means calling the manufacturer to find out. There may be information in KetoCalculator about this (Chapter 9). Make sure that the new brand is properly calculated into the meal plans.
IT WOULD NEVER HAVE OCCURRED TO US to eat something that wasn’t allowed on the diet. Even when we were allowed to, when the diet was ending, we had a hard time imagining eating food that hadn’t been allowed before.
Even when a commercial product is known and used regularly, formulations and commercial recipes can change. If breakthrough seizures develop, this should be one source of suspicion. At the risk of repeating ourselves, ingredients of commercially prepared foods, which are beyond your power to control, have to be watched very carefully. Be cautious in reading labels as well. By law, products that contain less than 1 gram of an ingredient per serving may be listed as 0, so a product that you thought had no carbohydrates may actually have up to 0.9 grams. If used on a regular basis, this can add up to a lot of excess carbohydrates.
With basic ingredients such as fresh meat, fruit, and vegetables, this is not much of a problem, although the exact content of even fresh produce does vary slightly from one source to another. If your child is having problems with the diet, always consider the food—both its quantity and its content—as the most likely culprit.
Are there commercial products in the diet? Has the source of cream or bacon changed? Is the cream still 36–40% fat? Different children have different amounts of tolerance for variations in food content. It is the little things that can mean the difference between success and failure of the diet. If your child is doing well on the diet, obviously you shouldn’t worry. You should simply continue to be careful.
THERE WAS ONE TIME we wanted to try a new brand of sausage. We read the label very carefully and checked it with Mrs. Kelly and everything. But shortly after we started including it in her diet, our daughter began feeling shaky, what she described as “wobbly” inside. Dr. Freeman said it sounded like she might be trying to breakthrough with seizures. We’re pretty sure it was because of that sausage; either the label was wrong or it referred to raw quantities and we were using cooked, or something. We went back to the old brand, and then she was fine.
When you and your child are making the tremendous effort to stick to the diet in pursuit of a tremendous goal, you need everyone’s cooperation and encouragement. You can weigh the food in advance, but if you are not there at dinnertime, someone else—an older sister or brother, a sitter, a grandmother—can put it in the microwave and serve the meal.
A child on the diet and all the child’s sisters and brothers, relatives, friends, and teachers should understand that even tiny amounts of cheating can spoil the overall effect of the diet and that their friendship, support, and encouragement are crucial to its success. It helps if family members avoid eating carb-rich foods in large quantities around the child, especially if the child is just starting and adapting to the diet.
Sarah had been on the diet for 2 weeks when her sister Grace had a birthday party. We didn’t want to exclude her, so we made a special ketogenic diet pizza for her and she ate it the same time as the other children. When the other children wanted to eat candy and cake, we just brought Sarah outside and did another activity. Later, she came back inside and joined in games when they were finished eating.
YOU CAN MAKE THE DIET work for you and your family! Being creative, careful, and planning meals in advance goes a long way!