Nutritional Needs of Cystic Fibrosis Child:

Generally, kids with Cystic Fibrosis need more calories than other kids in their age group. The amount of additional calories they need will vary according to each child’s lung function, activity level, and illness.

A child’s caloric needs might be even higher during an illness (even a low-grade infection can greatly increase the calories required). A CF dietitian can help you determine how many calories your child needs each day, and track growth and weight gain over time in order to provide a good nutrition plan.

Essential fatty acids. Patients with cystic fibrosis have altered levels of plasma fatty acids. 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. It is suggested that CF patients try to incorporate more omega 3 fatty acids into their diet, which can be done with either food sources or supplements. Salmon, flax seeds, and walnuts are excellent food sources of omega 3 fatty acids. Your CF dietician wll guide you with that.

Calcium. Patients with pancreatic insufficiency have difficulty absorbing calcium and are especially at risk for developing osteoporosis (weak, brittle bones), as are all kids with CF. Dairy products are good sources of calcium (and the full-fat varieties also are good sources of fat and calories). Many juices also are fortified with calcium.

Fat-soluble vitamins (vitamins A, D, E, and K  These vitamins are important for immune function, growth, and healing. They are absorbed along with fat. Most kids with CF have trouble digesting fat, they often have low levels of fat-soluble vitamins and need to take vitamin supplements.

Iron. Children with CF are at risk for developing iron-deficiency anemia, which can cause fatigue and poor resistance to infection. Fortified cereal, meats, dried fruits, and dark green vegetables are good sources of iron.

Salt. Kids with CF lose a lot of salt in their sweat, especially during hot weather and when they exercise. So a CF dietitian may suggest adding salt to an infant’s formula and giving an older child salty snacks. During hot weather and when your child plays sports, he may need sports drinks along.

Zinc.  is found in meats, liver, eggs, and seafood. It is important for growth, healing, and combating infection

Meals at Home and Away

If your child is a choosy eater, pay attention to the foods your child 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.

To make meals a pleasant experience:

• Try to keep meals to about 20-30 minutes for toddlers and young kids, who can’t sit still for extended periods.
• Eat in a comfortable environment with few distractions.
• Don’t give huge portions that might seem irresistible.
• Offer praise for eating well. Encourage kids to eat as much as they can comfortably.
• Keep food choices simple, especially for younger kids.
• Make foods as attractive and appealing as much as possible.

All childcare providers and teachers should know that your child has CF and be aware of his or her nutritional and caloric needs. Work with the staff to plan high-calorie meals and snacks or send food if the menu can’t accommodate your child’s needs. Young kids need help taking their enzymes and supplements, and the staff should understand that they need to be taken before all meals.

As kids with CF grow into teens, they’ll probably begin eating more meals away from home and may feel pressured to eat in certain ways. Work with your teen, emphasizing the positive and monitoring any weight changes that are of concern. If you’re packing lunch, include high-calorie options like ranch dressing and increasing Caloric Intake.

Make sure that kids with CF eat enough fat and calories. One way to increase calories without creating an entirely separate menu is to increase the calories and fat in one part of the meal.

Here are some simple ways to do so:

• Add extra butter or margarine to sandwiches, sauces, and potatoes.
• Use dressings on salads or vegetables; add extra oil to the dressing.
• Prepare meals with gravies and creamy sauces.
• Add bacon to burgers and chicken.
• Add dried skim milk powder to sauces and beverages.
• Add extra cheese to garnish potatoes or macaroni and cheese; order extra cheese on pizza.
• Top salads and sandwiches with avocados.
• 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 milk-based 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/lite.

Look for whole-fat versions of dairy products such as sour cream, cottage cheese, and yogurt. Don’t forget to check baby food labels. You’d be surprised at how the caloric level varies between brands.

 

Beyond Food: Enzymes and Tube Feeding

Enzymes

A child with pancreatic insufficiency 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 or an enzyme dose adjustment include:

• failure to gain weight, in spite of a strong appetite
• frequent, large, greasy, or smelly bowel movements
• bloating or gas

The CF dietitian or doctor will prescribe enzymes based on weight, growth, and how much a child eats at a time. An increased enzyme dose doesn’t necessarily mean that a child is doing poorly. It may mean that he or she has gained weight and now requires more enzymes.

Enzymes need to be taken with every meal and most snacks. They come in capsules, full of tiny beads, that can be broken open for kids who are too young to swallow entire capsules. They should only be mixed with foods that are acidic, like applesauce. They should not be chewed or crushed. Never change the dose of enzymes without first consulting your child’s dietitian or doctor.