Diet is an important topic in cystic fibrosis. The calorie requirements of those affected are very high. In addition to eating, it is often necessary to take medications such as digestive enzymes. Eating can therefore become a “struggle” for children with cystic fibrosis and shared meals. We would like to give you some tips for this difficult situation.
It is known that a good nutritional condition has a positive impact on the course of the disease in children with cystic fibrosis. Nutrition is therefore often an issue in families with cystic fibrosis. This is also because children with CF should eat high in calories and partly overeat beyond appetite. In addition, they usually have to consume digestive enzymes at the appropriate dosage. Sometimes there is also diabetes, which requires further action. In the back of their minds, parents also have the guidelines of the treating physicians, the recommendations of the nutritionists and the scales, so that pressure and anxiety develop in the parents. Children can use this: Not eating, can then become a power play between parents and children.
Tips for dealing with nutrition
- Sometimes it can be relieved to know that even in many families with healthy children, the theme of “food” is a recurring and not straightforward issue.
- It can relieve the burden of negotiating agreements. First, try to arrange short “maturities” and, if things are going well, extend them.
- If possible, plan shared meals, develop rituals.
- Hand over responsibility to your child, too. Try to implement agreements and also communicate them in the ambulance, for example.
- Start estimating achievements!
- Develop ideas with your child and try them out together. (Common cooking class, everyone is responsible for preparing a meal once a week, etc.)
Despite the importance of nutrition, the food should be associated as far as possible with enjoyment and fun, at the time spent together.
Here are some basic basics that have certainly already been taught to you by the nutritional advice in your ambulance:
- The food should be particularly high in energy.
- It is important to ensure a balanced and adequate fat intake. This includes the additional intake of pancreatic enzyme supplements for most children. The dosage depends on the amount of food eaten and the fat content.
- In the child there is an increased need for fat-soluble vitamins (A, D, E and K) as well as for the trace elements zinc, iron and selenium.
- Especially for smaller children, an increased salt intake is required.
Nutritional advice in your ambulance
Questions about nutrition are often associated with uncertainties and many questions for parents. Through qualified nutritional advice in your cystic fibrosis clinic, these are answered competently. In addition to measuring the child’s height and weight, counselling sessions through the clinic’s nutrition advice on ambulance attendance are part of this. In case of questions or uncertainties, a discussion with the nutritional advice can usually be arranged in the outpatient clinic in a timely manner.
Information material on nutrition for cystic fibrosis can also be obtained from the office of cystic fibrosis e.V.