RespiteMatch.com Health Blog

CF makes children sick by disrupting the normal function of epithelial cells - cells that make up the sweat glands in the skin and that also line passageways inside the lungs, liver, pancreas, and digestive and reproductive systems. A defect in these cells causes problems with the balance of salt and water in the body, leading it to produce thick mucus, which clogs the lungs, setting the stage for infections and other breathing problems. In children with CF, this mucus can also prevent the normal absorption of key nutrients and fat in the intestines, leading to poor digestion, slow growth, difficulty gaining weight, greasy bowel movements, and a decreased ability to fight infection.

About 85% to 90% of CF patients have pancreatic insufficiency by the time they’re 8 or 9 years old. This means that the enzymes created in the pancreas that digest fat, starch, and protein aren’t properly passed into the intestines. This causes problems in absorbing the necessary amounts of several important nutrients.

Important ways that you can help your child with CF grow healthy and strong include providing good overall nutrition along with extra fat and calories and prescribed enzymes (see the section Beyond Food - Enzymes and Tube Feeding).

Your Child’s Nutritional Needs
In general, children with CF may need 30% to 50% more of the recommended daily allowance of calories for their age group. This means that:

A toddler with CF may need 1,700 to 1,950 calories daily.
A child with CF may need 2,300 to 3,000 calories daily.
A teen with CF may need 2,900 to 4,500 calories daily.
These calorie needs may be even higher when a child is ill (even a low-grade infection can greatly increase your child’s calorie needs).

Every child with CF has different nutritional needs. You’ll work with your child’s CF dietitian to determine how many calories he or she needs each day. The dietitian will track your child’s growth and weight gain over time and will provide you with a nutrition plan.

Some parents of children with CF (and the kids as well) find that counting calories is bothersome. For this reason, it may be more helpful to focus more generally on your child’s growth pattern and on adding calorie boosters with fat in them to the foods your child normally eats. That’s because gram for gram, fat has more than twice the number of calories as protein and carbohydrates.

In addition to calories, kids with CF have some specific nutritional needs to help them thrive:

Calcium. Patients with pancreatic insufficiency have difficulty absorbing calcium and are especially at risk for developing osteoporosis (weak, brittle bones). Even patients who don’t have pancreatic insufficiency have a greater risk of developing the condition. All dairy products are good sources of calcium (and the full-fat varieties are good sources of fat and calories as well). Many juices also now include calcium.

Essential fatty acids. The body needs to get these particular types of fat from the diet. Found in plant oils, safflower oil, and soybean oils, they help in the building of cell membranes and may play a role in lung function.

Fat-soluble vitamins (vitamins A, D, E, and K). Important for growth and healing, these vitamins are absorbed along with fat. And because most children with CF have trouble digesting fat, they often have low levels of fat-soluble vitamins and need to take supplements.

Iron. Many children (both with and without CF) are at risk for developing iron-deficiency anemia, which can cause fatigue and poor resistance to infection. Fortified cereal, meats, dried fruits, and deep green vegetables are good sources of iron.

Salt. Children with CF lose a lot of salt in their sweat, especially during hot weather and when they exercise. Your CF dietitian may ask you to add salt to your infant’s formula and to give your older child salty snacks. During hot weather and when your child plays sports, the dietitian may recommend sending sports drinks to school for activities and physical education class.

Zinc. Important for growth, healing, and fighting infection, zinc is found in meats, liver, eggs, and seafood.

Meals at Home and Away
You’ll need to work with your child’s CF dietitian to create meal plans that include plenty of snacks, especially for toddlers who eat smaller meals. (Toddlers with or without CF may eat as many as six small meals a day.) When your child is older, schedule snacks so that he or she is eating enough, but isn’t simply snacking all day.

If your child’s a picky eater, pay attention to the foods he or she especially likes and adapt the menu as these preferences change. Ask an older child with CF to try one new food a week. It’s also important to model good behavior for kids of all ages. Eat a well-balanced diet with a variety of foods and make sure you try new things yourself.

Try to make meals a pleasant experience:

Try to keep each meal’s duration at about 20 to 30 minutes for toddlers and young children, who can’t sit still for long periods of time.
Eat in a comfortable environment with few distractions.
Don’t give huge portions that can seem overwhelming.
Praise for eating well, but don’t force plates of food to be finished; encourage kids to eat as much as they can comfortably.
Keep food choices simple, especially for younger children.
Make foods as attractive and appealing as possible.
All child-care providers and teachers should be aware that your child has CF and should be educated about your child’s nutritional and caloric needs. If your child is in day care, work with the staff to plan high-calorie meals and snacks or send meals or snacks if the menu can’t be changed to accommodate your child’s needs. Young children need help taking their enzymes and supplements and their child-care providers and teachers should understand that they need to take them before all meals.

As your child becomes a teen, he or she will probably begin eating more meals away from home and may come under pressure from his or her peers to eat less. Try to work as a team with your teen, emphasizing the positive and making sure that he or she is aware of any weight changes that are of concern. Provide high-calorie take-along snacks and focus on the meals that are eaten at home (often teens are home for breakfast - cystic fibrosis recipes for Tex Mex Sausage and Scrambled Eggs, PB&J French Toast, and Strawberry Banana Smoothie might come in handy). If you’re packing your child’s school lunch, include high-calorie options like ranch dressing and peanut butter crackers in the lunch bag.

Increasing Caloric Intake
It can be tricky to make sure that your child with cystic fibrosis eats enough fat and calories, especially if he or she is sensitive to what’s on siblings’ plates. One thing you can do to increase calories without creating an entirely different menu for the child with CF is to increase the calories and fat in one part of the meal.

For example, if you’re making baked chicken for the family, serve the child who has CF a piece of fried chicken, Baked Creamy Chicken, or Yummy Chicken instead. Add some extra butter to that child’s potatoes and vegetables and give Mighty Milk to drink so that his or her dinner looks similar to everyone else’s, but has a higher calorie and fat content.

Other ways you can increase fat and calories in the foods for your child with CF:

Add extra butter or margarine to sandwiches, sauces, and potatoes.
Use dressings on salads or vegetables; add extra oil to the dressing.
Prepare entrees with gravies and creamy sauces.
Add bacon to burgers and chicken.
Add dried skim milk powder to sauces and beverages.
Add extra cheese to scalloped potatoes or macaroni and cheese; order extra cheese on pizza.
Top salads and sandwiches with avocados or guacamole.
Add nuts to cookies, cakes, pancakes, and salads.
Add extra cheese and deli meats to sandwiches.
Grill sandwiches in butter or margarine.
Use heavy whipping cream and whole milk when cooking.
Make milkshakes.
Add instant breakfast mixes to beverages.
Make high-calorie smoothies.
Prepare calorie-rich desserts such as pudding and cheesecake.
Top hot chocolate, pudding, and other desserts with whipped cream.
Provide high-calorie snacks like peanut butter crackers or trail mix.
Prepare high-calorie versions of popular family recipes.
When you’re shopping, be sure to compare the labels on similar prepared foods and purchase those that have higher fat and calorie content. Avoid diet foods - anything that claims to be nonfat, low fat, reduced calorie, or light. Look for whole-fat versions of dairy products such as sour cream, cottage cheese, and yogurt (many natural food stores carry a variety of these products).

Beyond Food - Enzymes and Tube Feeding
If your child has pancreatic insufficiency, as the majority of kids with CF ages 8 and older do, he or she will need to take enzymes with meals and snacks to help digest food properly and to get the nutrition and fat needed to grow and gain weight.

Signs that your child may need enzymes include:

failure to gain weight, in spite of a strong appetite
frequent, large, greasy, or smelly bowel movements
bloating or gas
Your child’s CF dietitian and doctors will prescribe enzymes based on the child’s weight, growth, and how much he or she eats at a time. Enzymes need to be taken with every meal and most snacks. They come in capsules, full of tiny beads, which can be broken open for children who are too young to swallow entire capsules.

Enzymes should only be mixed with foods that are acidic, like applesauce. They should not be chewed or crushed up. You should also never change the dose of enzymes without first consulting your child’s dietitian or doctor.

In some cases, enzymes and high-calorie meals may not be enough to help your child thrive and feedings through a tube into the stomach may be needed. Tube feedings can take place at night and can be an excellent way to help children who are having trouble gaining weight, especially when they’re ill.

Although many patients and their parents are resistant to having a tube put in and they’re usually only prescribed when dietary interventions, calorie-boosting strategies, and enzymes haven’t been enough, having a tube put in is usually an uncomplicated outpatient procedure.

Tube feedings do not mean that you have failed to feed your child well or that he or she isn’t a good eater - often they just mean that the child needs so many calories in a day that it’s impossible for him or her to keep up. Your child’s doctor and dietitian will make recommendations about tube feedings.

It can be difficult for children with CF to eat enough in a day to meet their needs, especially when they aren’t feeling well. Although we all think we’d like to be able to eat a high-fat, high-calorie diet, many children with CF, especially teens, find it difficult to do so in our diet-conscious culture. Keep your eye on the positive - your child’s growth and weight gain - and you can help your child with CF eat well, stay healthy, and thrive.

Reviewed by: Allison Brinkley, RD, LD/N
Date reviewed: October 2003