If your child has received a diagnosis for Cystic Fibrosis (CF), you will no doubt want to gather all the information available on providing the best possible care.
According to Cystic Fibrosis Australia, CF is an inherited condition which primarily affects the lungs and digestive system due to a malfunction in the exocrine system.
People with CF develop an abnormal amount of excessively thick and sticky mucous within the lungs, airways and the digestive system. From birth, a person with CF will need constant medical attention.
The National Cystic Fibrosis Foundation’s 65 Roses Campaign is hosted during the month of May to raise awareness of CF.
As part of CF Awareness month in May, we’re shining a spotlight on how parents and care-givers can best nurture their children with CF for a healthier life.
After diagnosis, consult with the experts
All babies in Australia are offered newborn screening and the majority of people with CF are now diagnosed by the age of 2, although there are some exceptions to this.
For the check, a midwife will take a few drops of blood from a baby’s heel. If CF is suspected after a screening, the doctor will arrange a sweat test. A baby’s sweat will contain a high level of salt if CF is present.
Once CF is diagnosed, a specialist team should be consulted. This could include a senior doctor who is an expert in CF, a specialist nurse, physiotherapist, dietitian and social worker.
Stay healthy with daily therapy
CF is a condition which requires constant management. This may include daily physiotherapy to clear the lungs and exercises to help build stamina. This is an area where it helps to have the assistance of an organisation like Zest Care, who can provide a skilled Educarer to help with daily exercises.
A person with CF will also have a comprehensive medication plan which may include antibiotics, anti-inflammatory medications to lessen swelling and mucous-thinning drugs. A baby will need to start taking digestive enzymes straight away.
Concentrate on proper nutrition
Nutrition plays a very important role in treatment of CF. People with CF are required to consume between 120 – 150% of the daily amount of calories recommended for a person of the same age and size that does not have CF. This can assist in their chance of absorbing nutrients for healthy growth, as well as fighting off illnesses.
A person with CF will have a high calorie diet and while it is also important to be balanced with fruits, vegetables, proteins and fats, they also need a higher salt intake to replace what they lose through sweat. The sweat of someone with Cystic Fibrosis is up to five times saltier than people who do not have CF (Cystic Fibrosis Victoria).
Zest Care can help with nutrition planning and food preparation to ensure that a child with CF is getting the best possible nutrition.
Establish your support team
With great care, many babies and children with CF will go on to enjoy healthy and happy childhoods. In addition, Cystic Fibrosis is recognised as a disability by the Australian Government and fully-funded assistance is available.
Zest Care has been providing education and support for families in the comfort of their homes for over 16 years. Contact us today for more information on how we can help ensure your child receives the best possible support.
Resources:
Https://www.cysticfibrosis.org.au/all/learn/
https://www.babycenter.com.au/a557529/cystic-fibrosis-in-babies
Https://www.cysticfibrosis.org.au/vic/nutrition