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Nutrition for children

Eating a variety of foods is important for all children, but children with Cystic Fibrosis need to eat extra calories and protein for two reasons:

  • To compensate for loss of fat and protein in the stools due to a lack of pancreatic enzymes.
  • To help them become well-nourished so they can better withstand chest infections.

Foods rich in calories and protein will help children meet their nutritional needs, even if they only eat small portions. If your child has a poor appetite, it is better to offer small, frequent meals with two to three snacks in between. For a comprehensive guide to high protein foods and high calorie foods, download our factsheet Eating Well with Cystic Fibrosis from our publications library, which is specifically aimed at children with Cystic Fibrosis.

Special Dietary Supplements

If the child's weight gain or appetite is poor, the dietitian may recommend a special supplement to boost the nutrient intake. There are several available - here are some guidelines on usage:

  • Only use the quantity directed by your dietitian.
  • Give supplements immediately after a meal or at bedtime rather than with meals, as they are quite filling.
  • Take pancreatic enzyme supplements with milk based supplements.
  • Common supplements are available as milk shakes and fruit juices or as calorie powders and liquids.

Tube Feeding

If a child is unable to gain weight adequately, or is not growing well, it may become necessary to use tube feeding. This is another way of giving additional calories and nutrition to children with Cystic Fibrosis. There are two types of tube feeding:
  • Nasogastric (a tube down the nose)
  • Gastronomic (a tube directly into the stomach)

The other end of the tube is attached to a bottle or bag of high calorie/nutrient-enriched feed. A specified amount of the feed is delivered via the tube into the child's stomach, usually during sleep. This form of feeding can result in considerable weight gain. Your dietitian or doctor will normally only recommend tube feeding if other forms of nutritional support fail.

Vitamin Supplements

In CF, there is usually some loss of vitamins in the stools, particularly the fat-soluble vitamins A, D and E. It is important to take regular additional supplements of these; without them the blood level will be low and deficiency symptoms could occur.

Salt Supplements

Salt loss in sweat can be a problem during very hot weather, or when exercising for extended periods (ie long distance running). Your doctor may recommend routine salt supplements during hot summers or holidays abroad in a hot climate.

Pancreatic Enzymes

The most commonly used pancreatic enzyme supplements for children in the UK are Creon and Pancrease. They come in capsule form and are usually very effective at digesting food.

Dental Care

Because plenty of sugary foods have to be eaten, children with CF have to take extra care of their teeth. The following tips will help keep teeth healthy:
  • Brush teeth thoroughly morning and night with a small amount of fluoride toothpaste.
  • Rinse the mouth with water after sugary snacks and drinks.
  • Visit the dentist at least every four months.
  • Tell your dentist about the CF diet and ask for further advice about dental care.

Dietitian

Try to see the dietitian regularly, ideally at each visit to your local CF clinic. The dietitian can offer practical help and advice on how to improve the calorie and nutritional intake for individual patients.