Cystic Fibrosis

FORMS REQUIRED BY THE SERVICE FOR ANY CHILD WITH CYSTIC FIBROSIS:

 

Medical Management Plan 

• This document must be signed by a medical professional

 

Risk Minimisation Plan

• This document is completed by the parent with information the parent believes the centre should know about their child’s medical condition

 

Medical Communication Plan

• This is a document completed by the centre that outlines the way the centre will communicate with families about medical conditions

 

*From our Cystic Fibrosis Management Policy*

 

Cystic fibrosis is a genetic disorder that predominantly affects the lungs and digestive system (Cystic Fibrosis Australia, 2017). Our Out of School Hours Care (OSHC) Service will make every effort to fully include children with cystic fibrosis in our program and provide a safe and healthy environment for them. 

 

Cystic fibrosis is a genetic disorder present at birth that affects cells in the body that make mucus, sweat, and digestive fluids, causing the lungs and digestive system to get clogged with mucus. This frequently results in recurrent infections. Different people exhibit symptoms to different degrees and while there is no known cure, treatment can help manage the condition (Cystic Fibrosis Australia, 2020). A child with cystic fibrosis is likely to have many health professionals working with him/her which may include: 

• Clinical nurse 
• Gastroenterologist 
• Dietitian 
• Physiotherapist 
• Respiratory physician 
• Social worker 

 

Symptoms of cystic fibrosis include: 

• A phlegmy persistent cough 
• Wheezing 
• Constantly runny nose 
• Sinusitis 
• Repeated lung infections 
• Foul-smelling, greasy, and/or bulky stools 
• Diarrhoea and/or constipation 
• Poor growth and low body weight (despite a healthy appetite) 
• Inability to engage in physical play or exercise. 

 

TREATMENT  

The treatment for cystic fibrosis is ongoing and lifelong and varies from child to child. However, it generally involves: 

• daily physiotherapy to clear the lungs 
• exercise to assist in clearing the airways and building core strength 
• the use of a nebulizer to assist in opening the airways 
• a nutritious diet high in calories, salt, and fat: In some cases, extra calories/salt/fats are required, but not always – the dietitian and families will provide individual information of dietary requirements. 

• medications including (as required): 

• Enzyme replacement microspheres or capsules taken with food to aid digestion: Children/babies with cystic fibrosis vary in their ability to digest food naturally – some may need these while others will not. 
• Antibiotics as required to treat lung infections 
• Anti-inflammatory medication to prevent airway passage inflammation 
• Mucus thinners to assist the child in coughing up mucus and decreasing the risk of lung infection 
• Bronchodilators open up and relax the muscles around the bronchia (lungs). 

 

DEHYDRATION  

If a child/baby is lacking in salt they can quickly become dehydrated. Signs of dehydration include: 

• fewer wet nappies than normal 
• dark sunken eyes 
• dry lips or skin 
• crying without tears 
• dark yellow urine 
• rapid breathing 
• drowsy and/or lethargic 
• salt crystals on the skin 

 

EARLY WARNING SIGNS OF A LUNG INFECTION  

As children with cystic fibrosis are likely to frequently develop lung infections it is important to be aware of the early warning signs, which include: 

• coughing more than normal, or a ‘different’ sounding cough 
• coughing up more mucus than normal or a change in the color of coughed-up mucus 
• wheezing sounds while breathing, or being unable to breathe while feeding 
• reduced appetite  
• decreased energy  
• fevers 

 

INFECTION CONTROL  

Minimising the risk of infection for children with cystic fibrosis is imperative for their ongoing health. Precautions to take include: 

• frequent and thorough hand washing 
• encouraging the child to wash hands after coughing, and at all other usual times (after toileting, before eating, etc.) 
• keeping a child/baby with cystic fibrosis away from other children with a cold or are otherwise ill 
• ensuring children’s immunisations are up to date 
• cleaning and drying all medical equipment thoroughly 
• not allowing the child with cystic fibrosis to share cups or eating utensils 
• not leaving containers of water lying around where germs that cause lung infections can breed 
• keeping the classrooms dry and well-aired. 

 

IMPLEMENTATION 

We will involve all OSHC educators, families, and children in regular discussions about medical conditions and general health and well-being throughout our curriculum. The OSHC Service will adhere to privacy and confidentiality procedures when dealing with individual health needs. 

 

Management and Nominated Supervisor will ensure: 

• upon employment at the OSHC Service, all staff will read and be aware of all medical condition policies and procedures, including the Cystic Fibrosis Management Policy 
• any child enrolled at the OSHC Service with cystic fibrosis will require a Medical Management Plan completed by the child’s medical practitioner/ specialists before commencing at the OSHC Service 
• all staff are aware of the Medical Management Plan and have procedures in place for ensuring the child’s safety, health, and wellbeing  
• a risk minimisation plan has been developed in consultation with the parents of the child 
• a communication plan is developed in consultation with the parents of the child 
• staff preparing food are trained in food preparation and food requirements for the child with cystic fibrosis 
• families of all children with cystic fibrosis provide all necessary medications/treatments showing the expiry date and clearly labeled with the child’s name 
• the immunisations of all children attending the OSHC Service are kept up to date 
• classrooms and areas occupied by children are kept dry and well ventilated 
• that all staff adhere to high levels of hygiene at all times 
• that all staff maintain written records of medications/treatments administered to a child with cystic fibrosis 
• communication between management, educators, staff, and parents/guardians regarding the OSHC Service’s Cystic Fibrosis Policy and strategies are reviewed and discussed regularly to ensure compliance and best practice reflecting the latest research 
• all staff members are able to identify the early warning signs of lung infection for children with cystic fibrosis attending the OSHC Service 
• children with cystic fibrosis are not discriminated against in any way 
• children with cystic fibrosis can participate in all activities safely and to their full potential 
• to communicate any concerns with parents/guardians regarding the management of children with cystic fibrosis at the OSHC Service.