The symptoms of cystic fibrosis can be considerably relieved through diet and exercise, with guidance from at a cystic fibrosis specialist staff.
Nutrition
For people with cystic fibrosis, getting the right nutrition is vital. A healthy body weight is necessary to help fight off infections, and it is important that there is enough reserve energy to rely on when the person is ill.
Cystic fibrosis causes mucus to build up and block the small channels that carry digestive juices and enzymes. Over time, this causes the pancreas to become damaged. The effect of cystic fibrosis on the pancreas varies from person to person, but most people have to take digestive enzymes from birth to help them digest food and get the nutrients they need.
The diet of someone with cystic fibrosis should be high in calories, as they will not be able to digest all the food they eat. A special diet should start as soon as cystic fibrosis is diagnosed, which will need to be adapted as people get older.
Babies with cystic fibrosis
Babies with cystic fibrosis may be breastfed as usual, otherwise most baby milks and formulas will be suitable. In some cases, if the baby is not gaining enough weight, a high-energy formula may be needed or nutritional supplements added to milk feeds to give the baby more calories (energy). The parent should ask a dietitian at their cystic fibrosis centre if they are unsure about this.
Before a baby moves onto solid foods, they may need extra salt as both breast milk and baby milk are very low in salt. Cystic fibrosis makes sweat five times saltier, and more salt than normal is lost through skin. If the baby needs extra salt, the dietitian or doctor at the cystic fibrosis centre will advise on the appropriate amount and prescribe a salt solution. A parent should never add salt to their baby’s food or drink without specific advice from their cystic fibrosis specialists.
A parent can feed their baby any normal solid baby foods, but they will need vitamin supplements to compensate for the loss of vitamins A, D, E and K in their stools. These are available in two liquid preparations. Vitamins A and D are usually combined in one, and there is usually a separate one for vitamin E. Vitamin K is now prescribed by many doctors.
A baby with cystic fibrosis will also need pancreatic enzymes to help them digest food. These take the place of the food-digesting enzymes missing from their digestive system. They usually come in the form of microspheres or minimicrospheres (granules), which can be mixed with a little formula, expressed breast milk or fruit puree and spoon fed ideally at the start, during and after the feed. The granules should never be given dry as they can be a choking hazard. A dietitian can advise on the amount to use and the most suitable way to give the enzymes.
Children with cystic fibrosis
Children who have cystic fibrosis should eat a varied diet, but they should also eat a large amount of protein and calories. They should eat plenty of protein such as meat, fish and eggs, as well as starchy foods like bread and pasta. If a child’s appetite is poor, give them food little and often, and offer snacks in between meals. Children who find it particularly hard to gain weight can be given dietary supplements in the form of milk shakes or fruit juices. You can talk to a cystic fibrosis dietitian about these.
Like babies, children with cystic fibrosis will need to continue taking vitamin A, D, E and K supplements to compensate for the vitamins they lose. Children also need to continue taking pancreatic enzymes with all fat-containing meals, snacks and drinks. The capsules should be taken before and during the meal and the number of capsules will vary depending on the fat content of the meal. Enzymes can be taken in easy-to-swallow capsules. A dietitian may recommend salt supplements for a child with cystic fibrosis, especially in hot weather or if they are going on holiday to a country with a warm climate, where sweating may cause a loss of salt.
Children with cystic fibrosis may eat more sugary foods than normal due to their high-calorie diet, so it is important to make sure they brush their teeth properly and visit the dentist regularly.
If a child cannot gain enough weight and dietary supplements have not helped, they may need to be tube fed. This will usually be either nasogastric (the tube is inserted through the nose and goes down to the stomach), or gastrostomy (the tube is inserted directly into the stomach). The other end of the tube is attached to a bag of high-calorie/nutrient food that is delivered straight to the stomach, usually while the child sleeps.
Adults with cystic fibrosis
Adults who have cystic fibrosis do not need to avoid any particular food, but it is important they have a diet high in protein and energy to maintain their weight. They should eat regular meals and snacks as this helps to maintain energy intake. They should eat three meals a day, including plenty of meat, fish and eggs, and eat several high-calorie snacks in between.
If someone with cystic fibrosis wants to be a vegetarian, they should talk to their dietitian about alternatives to meat. A vegan diet is not advised for people with cystic fibrosis as it tends to be especially low in energy.
Most adults with cystic fibrosis need to continue taking pancreatic enzymes with all fat-containing meals, snacks and drinks. The capsules should be taken before and during the meal and the number of capsules will vary depending on the fat content of the meal. There are different types and strengths so talking to the cystic fibrosis specialist team will help the person find one that suits them. Creon is the usual preparation used in the UK. People with cystic fibrosis should not stop taking pancreatic enzymes unless they are told to do so by their dietitian or doctor, as this can lead to a serious blockage of the bowel.
Most adults need to continue taking vitamin A, D, E and K supplements. These come in the form of prescribed multivitamin tablets.
People with cystic fibrosis who lose a lot of weight due to an infection or illness may need to be tube fed to help them gain weight. As in tube feeding for children, this will be either nasogastric or gastrostomy, depending on how long the tube must stay in for. A gastrostomy tube (which is inserted directly into the stomach) is best for longer periods of time or repeated courses of treatment as it is unlikely to be dislodged during coughing or physiotherapy.
Exercise
Exercise is recommended for everyone with cystic fibrosis. This may vary from taking part in normal school activities to individualised exercise programmes. Infants and toddlers with cystic fibrosis should have some exercise included in their normal daily routine. Any sport or exercise that gets a person with cystic fibrosis moving is good, but if there are any concerns or worries, they should ask their physiotherapist.
Children and adults are also encouraged to include stretching exercises into their routine to mobilise the joints and muscles around their chest, back and shoulders, and to be aware of maintaining good posture.
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