This leaflet is aimed at staff who will be supporting a child with CF who needs to take enzymes while they are in school.
What is CF?
Cystic fibrosis (CF) is an inherited condition that affects the lungs and digestive system.
In a person without CF, mucus in the lungs and digestive system is thin and slippery. This helps protect the lungs from infection and keeps the digestive system working well.
In a person with CF, this mucus becomes thick and sticky. This can block part of the digestive system (the pancreas) where digestive enzymes are made. The pancreas becomes blocked, and these digestive enzymes are not produced.
Digestive enzymes are needed to break down foods containing fat, protein or starchy carbohydrates. Most people with CF need to take enzymes with all meals and snacks, and milky drinks. These enzymes come in capsules or granules called Creon.
Supporting a child with CF who needs to take enzymes (Creon)
Creon must be taken with all foods containing fat or protein or starchy carbohydrates. These include milky drinks, food eaten at lunchtime, snacks at breaktime, and snacks at the start and end of the school day, for example, breakfast and after school clubs.
The amount of Creon needed varies depending on the fat content of the food, and the amount eaten. Parents or carers should be able to advise on the Creon dose required.
Creon must be taken as close to the time of eating as possible, and always within 20 to 30 minutes of eating. This is so the Creon can get to work on the food that is being eaten. Most children are happy to take Creon in front of others, some children may prefer somewhere they can take their Creon discreetly.
Children who bring a packed lunch or snack to school
Parents or carers should be able to provide information on how much Creon is needed with their child’s packed lunch or snack(s), including individual items if required.
Children who have meals or snacks or milk drinks provided in school
Parents or carers should be able to provide information on how much Creon is needed with meals or snacks and on individual items on the school menu as required.
In the case of younger children, a nominated member of staff should always ensure the correct amount of Creon is taken at the same time as the child is eating.
Often older children are able to manage their Creon dose independently. If parents agree, it can be useful to allow them to carry the Creon needed for the day in a Creon holder which is kept in their school bag. This will help them prepare for secondary school.
How is Creon taken?
Creon is available as Creon capsules or Creon Micro granules.
Creon Micro granules are measured with a Creon Micro-scoop. A measured quantity of granules are placed onto a spoonful of fruit purée, yoghurt or moist food and taken immediately before a meal or snack or milky drink.
Creon capsules are usually swallowed unopened immediately before meals, snacks or milky drinks. Some children open the Creon capsules and take the granules inside on a spoonful of fruit puree or yoghurt or moist food. The open capsule shells are discarded.
Children should not chew or ‘crunch’ the Creon capsules or granules as this will cause the enzymes to activate in the child’s mouth and not in their digestive system, and can cause irritation to the inside of their mouth.
Some children split their Creon dose: for example, they take some Creon just before a meal, and the rest at the end of the meal. This is helpful if children eat slowly or do not know how much they are going to eat.
Parents or carers will be able to provide information about the type of Creon used, the amount required, and how their child takes it.
Are there any foods that don’t need Creon?
Fruit, vegetables and fruit-based snacks do not contain fat, protein or starchy carbohydrates and therefore do not need Creon. A longer list of foods that don’t need Creon is at the end of this leaflet.
What should I do if a Creon dose is forgotten, or taken late?
Creon must be given at the same time as food. If a Creon dose is accidentally forgotten, the usual dose of Creon can be taken as long as this is within 20 to 30 minutes of eating the meal. Please make sure parents are aware that the Creon dose was taken late. If more than 30 minutes have passed since finishing a meal, Creon should not be taken as it is unlikely to be effective.
Make parents aware that the Creon dose was missed or taken late, and they will be able to advise on what to do. In both cases, be aware that the child may develop some of the symptoms, which are described in this leaflet – associated with not taking enough Creon. Reassure the child as they may be feeling anxious about forgetting or missing their Creon.
What should I do if a child with CF hasn’t eaten all their food?
If a child hasn’t eaten well, they may not have had the full amount of food for the amount of Creon they have taken. This isn’t harmful if it happens occasionally.
It can be useful to have a discussion with the parents to understand the reason for this, for example, the child’s not liking the food or being self-conscious about taking Creon in front of others. Avoid offering a favourite food, such as chocolate or crisps, to ‘mop up’ the Creon. This is not necessary, and children will soon learn to manipulate this situation.
What should I do if a child with CF has left their Creon at home?
Contact parents as soon as possible. Ideally, they will be able to bring in a supply of Creon from home. If this is not possible, offer the child foods that do not need Creon. This is unlikely to be a substantial meal and the child is likely to become hungry later.
Do not offer the child their usual meal or milk drink and ‘hope for the best’. They are unlikely to absorb much of the nutrition from the meal and are likely to experience symptoms associated with not having enough Creon. If this happens frequently this can lead to serious intestinal problems and the child’s growth may be affected.
Parents should ensure there is an unopened and in-date ‘spare’ pot of Creon kept in school at the start of each term for such occasions. Once a pot of Creon has been opened it should be discarded after three months as it will start to lose its effectiveness.
Where should Creon be stored?
Creon should be stored at room temperature, away from direct sources of heat or light so it does not lose its effectiveness. Creon should not be stored on windowsills, radiators, or on top of microwaves or in trouser pockets. Creon should not be stored in the fridge.
What are the signs of not having enough Creon?
Signs of not having enough Creon include abdominal pain and wind, an urgent need to go to the toilet and loose, pale, oily or offensive-smelling stools.
Most children will understandably feel embarrassed about this, although they may deny having any of these symptoms. Please ensure parents are made aware if you notice any of these symptoms as the Creon dose may need to be adjusted.
Children with CF should always be able to indicate to their teacher that they need to leave the class and be allowed to go to the toilet at short notice.
Salt and fluid in CF
Why are fluid and salt so important in children with CF?
Some children with CF lose more salt and fluid through their sweat than their peers. This is especially important during hot weather or when exercising. Keeping well hydrated helps thin the mucus in the lungs and keeps food moving through the gut.
Children with CF should be allowed access to a drink throughout the day, including during lessons and breaks, and especially in hot weather and while doing exercise.
How do children with CF get extra salt?
Children with CF get extra salt by eating salty food, salty snacks and by adding salt to meals. Some children with CF are prescribed salt supplements such as Dioralyte or salt tablets. Some children take isotonic drinks to help replace lost water and salt.
Parents will be able to provide you with more information if their child needs to take extra salt and when this should be given.
What are the signs of salt depletion or dehydration?
Salt depletion and dehydration will vary in severity and can affect a child’s mood or behaviour. Common signs of salt depletion and dehydration are listed below. Make parents aware if you notice any of these signs; they should be able to advise on the appropriate action.
| Common signs of salt depletion | Common signs of dehydration |
|---|---|
| Common signs of salt depletion Nausea and vomiting, loss of appetite, headaches, confusion, irritability, and restlessness, loss of energy, drowsiness and fatigue, muscle weakness, spasms and cramps. | Common signs of dehydration Increased thirst, dry sticky mouth, headaches, dizziness, feeling tired or lethargic, poor concentration, not passing urine regularly, urine which is dark in colour.* |
| Common signs of salt depletion | Common signs of dehydration |
* Be aware that some vitamins and medications can alter the colour of the child’s urine.
Is there anything else I need to be aware of?
In the past, children with CF needed to supplement their diet with high energy, high-fat, snacks, such as chocolate and crisps just to maintain their weight. As new medicines have become widely available many children with CF no longer need these high energy snacks.
Parents will be able to provide you with information on their child’s specific requirements.
Foods that DON’T need Creon
The following foods do not need Creon. They are either fat-free or contain very small amounts of fat, and do not contain protein or starchy carbohydrates.
Fruit: All fresh, canned, frozen, dried and puréed fruit, fruit bars or ‘winders’ with no added fat (Creon is needed with avocado, coconut, and any dried fruit with a yoghurt coating).
Vegetables: All fresh, canned, frozen, dried vegetables, salad and vegetable sticks (Creon is needed with fried or battered vegetables, vegetable crisps, vegetables in sauce or with dressing, potatoes, sweet potatoes and olives).
Sweets, sugar and desserts: Jelly sweets, boiled sweets, jelly, meringue, sorbets and ice lollies, sugar, syrup, jam, honey, marmalade, Marmite, tomato ketchup and brown sauce. (Creon is needed with chocolate and toffees and ice cream.)
Drinks: Water, juice, squash, cordials, slush puppies, fizzy drinks.
Foods that DO need Creon
Creon is needed with all foods containing protein, fat or starchy carbohydrates.
Starchy carbohydrates: Bread, biscuits, breakfast cereals, cakes, crackers, rice cakes, pasta and rice.
Protein foods: Meat, fish, eggs, nuts, beans and pulses and plant-based alternatives such as Quorn or soya mince.
Milk and dairy foods: Cheese, yoghurt, milk, milkshakes, and hot chocolate.
Fats and oils: Cooking oil, butter, margarine, olives, nuts, peanut butter, chocolate spread, crisps, chocolate, avocado, coconut, salad dressing and mayonnaise.
| Creon | |
| Discussion with parents to establish how to support the child taking Creon in school | |
| Plan agreed with parents to make sure staff can ensure the child takes Creon with all meals and snacks and with milk drinks | |
| Staff to record the amount of Creon has been given under supervision | |
| Staff to be aware of foods that need Creon and foods that don't need Creon | |
| Staff to be aware of Creon storage | |
| Parents to supply a ‘spare’ pot of Creon – to be replenished when empty, or within three months of opening, or once expiry date has been reached | |
| Staff to be aware of signs of insufficient Creon and notify parents if required | |
| Toilet pass | |
| Staff to be aware that quick, easy and discreet access to the toilet may be required | |
| Staff to be aware if the child is going to the toilet frequently or for long periods, and notify parents if this happens | |
| Salt and fluids | |
| Staff to be aware child needs to remain well hydrated and needs access to drinks throughout the day, including during lessons. | |
| Staff to be aware of signs of salt depletion or dehydration. This is particularly important in hot weather or sporting activities. | |
| Child to have access to salt supplements, for example Dioralyte, isotonic drinks, or salty snacks and to be able to take these when required |
Notes
Disclaimer
This leaflet is aimed at helping staff in primary school understand the nutritional needs of children with CF. It is the responsibility of the child’s parents/ carers to make staff aware of their own child’s requirements. Please contact the child’s parents for advice and guidance.
Who can I contact if I need more information?
Paediatric CF dietitians
- Tel: 01223 216655
- Email: CUH Paediatric Diabetes team
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