Barts and The London Children's Hospital | For patients, families and carers | Health tips | Health tips - cystic fibrosis advice
Health tips - cystic fibrosis advice
My child has cystic fibrosis – what should I tell their school?
Answered by Jacqui Cowlard, Cystic Fibrosis Clinical Nurse Specialist, Barts and The London Children's Hospital
It is important to tell your child’s school or nursery that they have cystic fibrosis (CF) from the beginning. For some teachers, this will be the first time they have heard of CF and they will need basic information. You can download a leaflet called School and Cystic Fibrosis from the Cystic Fibrosis Trust website at www.cftrust.org.uk which will help. The CF Nurse will always give a copy of this to the school.
Written information for teachers can be followed by a visit to the school by one of our nursing team. Parents are also invited to attend. At the school visit, the cystic fibrosis nurse will explain more about the condition, such as how it is inherited, how it affects the body and which treatments are needed on a daily basis.
Practical information can also be given, such as advice about medication dosage, storage and timing. The CF nurse will also ensure that your child is always able to have a drink in the classroom and when exercising (to prevent dehydration). Other issues that may be discussed are having access to toilets (in case your child needs to go to the toilet quickly) and good hygiene practice to help prevent your child catching germs.
It is helpful to involve class teachers, office staff, sports teachers, dinner ladies, school nurses and special educational needs co-ordinators when providing information. The school is then given a written summary of all the information discussed to be kept in the child’s records with the CF team contact information.
Why do children with cystic fibrosis need a high fat diet?
Answered by Christie Graham, Paediatric Dietitian, Barts and The London Children'sHospital.
Children with cystic fibrosis should eat a wide variety of foods providing a balanced, high quality diet. Many children with cystic fibrosis need more calories than other children of the same age to grow and gain weight normally due to symptoms of the condition, such as not being able to digest food properly.
Most children with cystic fibrosis do not produce enough pancreatic enzymes to digest food. These enzymes are replaced in the form of enzyme capsules taken with meals and snacks, but there is still a loss of energy and fat in the stools.
Another reason why children with cystic fibrosis need more calories is that they have a higher risk of developing a chest infection. With an infection, they need more energy to fight it and they may also eat less if they feel unwell.
Children with cystic fibrosis can get a high-calorie diet by eating more food than other children of the same age, but some find this difficult. Fat provides double the calories of protein and carbohydrate which means adding extra fat to the diet increases the calories. Foods such as butter, margarine, full cream milk or milk powder, cream, oil, mayonnaise and cheese provide extra fat. It is important to remember that extra pancreatic enzymes must be given to compensate for the extra fat.
A dietitian may also recommend other nutritional supplements, such as high-calorie milkshakes or flavoured fat supplements, to help a child with cystic fibrosis get enough calories to grow and gain weight. As well as loss of fat in stools, fat soluble vitamins may be lost so children with cystic fibrosis are given extra vitamins A, D, E and sometimes K in order to maintain normal levels.
