Supporting students with Cystic Fibrosis
Every student with Cystic Fibrosis (CF) is different. For support and education please contact Linda Cheese on 02 4985 5407 (CNC CF, Hunter New England Health).
Cystic Fibrosis is the most common genetic disease in Caucasian people. Three to five days after birth all babies born in Australia are tested for CF. Newborn screening identifies about 95% of babies with CF. Approximately 90 babies are born with CF each year in Australia. It is caused by a change (mutation) in a person's genetic makeup. This mutation brings about an abnormality in the way salt and water move in and out of the cells of the body causing the body to secrete thick, sticky mucus.
CF mainly affects a child's lungs, digestive system and sweat glands, and it is the most common life-threatening condition affecting Australian children. There is no cure for Cystic Fibrosis so treatment is life long and is based on the prevention of illness and the management of symptoms, however with advances in medical research and treatment the life expectancy of children with CF has extended into their 40s and beyond.
CF is a genetic condition and therefore the cold-like symptoms the student may display are in no way contagious - people must be born with this condition to have it.
Symptoms
Cystic Fibrosis primarily affects the respiratory, pancreatic and gastrointestinal systems. In CF an abnormal gene causes mucus to become thick and sticky. The mucus builds up in the lungs and clogs the airways. This makes it easy for bacteria to grow and leads to repeated serious lung infections.
The thick, sticky mucus can also block tubes, or ducts, in the pancreas. As a result, digestive enzymes that are produced by the pancreas cannot reach the small intestine. These enzymes help break down the food eaten. Without the enzymes intestines cannot fully absorb fats and proteins.
Symptoms of a child with CF may include:
- Persistent coughing with wheezing and phlegm
- Stomach cramps and pain
- Shortness of breath
- Fatigue
- Recurrent respiratory infections
- Muscle cramps during hot weather due to loss of salt
- Poor growth and weight gain in spite of a healthy diet – the child may be physically smaller than his/her peers.
Treatment
The care and welfare of a child with CF is complex, with the child requiring constant and ongoing medical management. There is a need for a specialised team approach, with regular contact between members of the child's medical tea, the parents, the child and school staff.
These include:
- Daily physiotherapy
- Antibiotics for lung infections when they occur
- Exercise
- A specific diet
- Daily medication.
A child with CF is more likely to develop asthma and as a result, the child's physical activity may be restricted. The child will also have higher-than-normal risk of developing insulin-dependent diabetes. Cystic Fibrosis does not impair a child's senses or general abilities.
In addition to regular hospitalisation and clinical treatment, the family of a child with CF needs to provide a variety of medical and non-medical treatments on an ongoing and lifelong basis.
Issues
- Isolation can be a major issue for children with CF. Treatment in hospital will often involve being in an isolation ward with no contact from other students with CF.
- A child with CF is often the only child in the school with this condition. This again means little contact with other CF children, however this is the preferred option.
- A strict health regime must be followed each day.
- The possible need for medications to be administered during the school day.
- Episodes of abdominal pain that may result in the child requiring rest or the need to go home during the school day.
- The need to have regular medication before and after exercise.
- Daily physiotherapy before and after school.
- Regular taking or oral pancreatic enzymes before very meal, including snacks to help digest fats and proteins and absorb more vitamins.
- Regular taking of vitamin and salt supplements.
- The need to eat regular high calorie meals with high fat, high protein and high salt content.
- Fatigue due to early morning therapies and/or disturbed sleep.