The Monash Health Cystic Fibrosis Service was established in 1993, initially caring only for children, with the expansion of an adult service in 1999. Monash Cystic Fibrosis now provides lifetime care for over 200 adults and children with cystic fibrosis. Show Monash Children’s Cystic Fibrosis Multidisciplinary Team The Monash Children’s Cystic Fibrosis multidisciplinary team is made up of six respiratory consultants (doctors), two Cystic Fibrosis nurse coordinators, two physiotherapists, two dietitians, one social worker, one clinical psychologist and a team of rotating administrative staff. Doctors At the Monash Children’s Hospital, we have a team of doctors who work together to give your child the best care. You will be assigned to one doctor to oversee your child’s care in the specialist consulting clinic. However you may see other doctors on the ward if admitted. Led by Associate Professor David Armstrong, the team of doctors includes:
Nurse Coordinators The Cystic Fibrosis coordinators will be your main point of contact during business hours. They are nurses that work with all Cystic Fibrosis patients to liaise with the rest of the team and ensure your child is receiving the best care. They can facilitate education, elective admissions and scripts and are the best first port of call for any Cystic Fibrosis related questions. Our paediatric Cystic Fibrosis nurse coordinators are Sarah Sheedy, Kate Johnson (KJ) and Katie Gotterson. Physiotherapists Our physiotherapists can teach you a range of airway clearance techniques to help keep your child’s lungs healthy. They can also help with teaching correct inhaler and nebuliser techniques, assessing exercise tolerance, prescribing exercise programs and assessing and treating musculoskeletal, incontinence and sinus problems. Your child can see a physiotherapist during clinic appointments and once to twice daily during a stay in hospital. Our Cystic Fibrosis team physiotherapists are Shelley Bowen and Belinda Kerr. During a hospital admission, your child may also be seen by other specialist paediatric physiotherapists who have been trained by the team to work with people with Cystic Fibrosis. Dietitians A team of dietitians will work with you and your child to manage your child’s nutrition. They will track your weight and will adjust meal plans, pancreatic enzymes and nutritional supplements accordingly. They will also provide education about specialist nutritional needs in CF such as:
Our dietitians are Caitlin Miles and Arabella Thomas. Social Worker You will meet a social worker who will get to know you and your child. They will be able to help you and your child overcome challenges you may face due to Cystic Fibrosis. These may include navigating the health care system, improving emotional and psychological wellbeing, linking into practical support networks as well as accessing financial assistance. Our social worker is Naomi Erlich. Clinical Psychologist Clinical psychologists practice in the area of assessment and treatment of mental disorders such as anxiety and depression. Our clinical psychologist is Dr Hawran Baldey. Hawran works one day per week. She works with both adults and children with Cystic Fibrosis and their families during admissions as well as time limited, short-term cognitive behaviour therapy for paediatric outpatients. Hawran’s availability is limited, and as such, an important part of her role is also to support patients in finding mental health services and support in the community. Nursing Staff You will meet many nursing staff throughout your care within Monash Children’s. The nurses on the wards are there to help make you and your child’s time a little easier whilst in hospital. They will communicate with the doctors and allied health team while your child is an inpatient and attend to medications and observations. Pharmacist The pharmacist will help you understand the new medications that your child requires. They will be able to provide equipment such as syringes or cups to make medication administration easier. They will also help you navigate the assistance available from the government for the cost of medications and explain the Pharmaceutical Benefit Scheme (PBS). Administrative staff Our administrative team will usually answer the phone, book and reschedule your clinic appointments and manage general administrative tasks for the team. You and your child You and your child are the most valued member of your healthcare team. You know your child and his or her symptoms best and your opinions are highly valued. We will help to create family centered treatment plans that will assist your family to achieve the best health outcomes for your child.
Cystic fibrosis (CF) is a genetic disorder that affects the lungs and digestive system. Kids with CF are prone to repeated lung infections. The CF gene disrupts the essential balance of salt and water needed to maintain a normal thin coating of fluid and mucus inside the lungs, pancreas, and other organs. The mucus becomes thick, sticky, and hard to move. Normally, mucus in the lungs traps germs, which are then cleared out of the lungs. But in CF, the thick, sticky mucus and the germs it traps remain in the lungs, which can become infected. In the pancreas, thick mucus blocks enzymes from reaching the intestines to digest nutrients properly, especially fats. That's why students with CF have problems gaining weight, and have to eat more. There currently is no cure for CF. CF does not affect cognitive or learning abilities. Students with CF may:
What Teachers Can DoStudents with CF may miss class time or be absent due to breathing therapy at home, lung infections, doctor visits, and hospital stays. Your students with CF need special considerations regarding missed instruction, assignments, and testing. Being active can help loosen mucus in the lungs. Students with CF should be encouraged to participate in physical exercise, sports, and other school activities. To help students with CF avoid lung infections, encourage all your students to wash their hands with soap and water or sanitizer after using the bathroom, coughing, sneezing, or playing outside at recess. Move students with CF away from classmates who are sick. Make sure your students with CF know they can:
Learning that your child has cystic fibrosis can be overwhelming. You may feel sad, guilty, scared, or even angry, but you are not alone. We are here to help.
 The first step in treating cystic fibrosis is confirming a diagnosis. If you or your doctor suspects your child may have CF, a sweat test will likely be ordered. A sweat test is the most reliable way to diagnose cystic fibrosis. This simple, painless test measures the concentration of salt in a person's sweat. A high salt level indicates CF. It is important to have a sweat test done at a Cystic Fibrosis Foundation-accredited care center, where strict guidelines help ensure accurate results. Watch the video to hear CF clinicians discuss:
Learn more about sweat tests and how doctors diagnose cystic fibrosis here. If your child is diagnosed with cystic fibrosis, you likely have lots of questions. Can my child live a normal life? How can I help my child get the best possible care? What will my child need to stay healthy? Although it may take you and your family time to adjust to the news that your child has CF, it helps to know that you are not alone. Learn more about CF -- from diagnosis to living with the disease as an adult -- in "An Introduction to Cystic Fibrosis: For Patients and Their Families," or watch the video series. Hear Preston Campbell, M.D., our current president and chief executive officer, talk about:
Fighting CF is a team effort. Every day, people with CF and their families, health care professionals, researchers, donors, and volunteers work together to advance the search for a cure and improve the quality of life for those with CF. Watch a brief video on how clinical research has made a difference in the lives of people with CF. We know that a positive CF diagnosis can be scary, but take action by getting involved in your local CF Foundation chapter. The best place to receive comprehensive cystic fibrosis care is at one of the more than 130 Cystic Fibrosis Foundation-accredited care centers nationwide, which specialize in treating CF. Because CF is a complex disease, caring for someone with the disease requires a team approach. At the center of that team is you, your child, and your family. Guiding you every step of the way and providing specialized, comprehensive care are experts and specialists, including CF nurses and doctors, dietitians, social workers, psychologists, and respiratory therapists who are all trained in treating infants and children with CF. You and your child can expect to have regular visits with this care team for checkups and check-ins multiple times a year. Members of your CF care team will test your child's lung function, prescribe necessary medications and treatments and work closely with you to help you manage your child's disease. Learn more about your child's CF care team. Listen to CF clinicians discuss:
Treating a complex disease like cystic fibrosis requires therapies that address problems in different parts of the body, especially the lungs and the digestive system. Cystic Fibrosis Foundation-accredited care centers work closely with people with CF and their families to create individualized treatment plans. Each day, most people with CF typically do some form of airway clearance to help loosen and get rid of the thick mucus that can build up in the lungs. Many people with CF use an inflatable vest that vibrates the chest at a high frequency to help loosen and thin mucus. Most people also take inhaled medicines -- liquid medicines that are made into a mist or aerosol and then inhaled through a nebulizer. These medicines include antibiotics to fight lung infections and therapies to help keep the airways clear. https://www.instagram.com/p/BUKQXhUB831/ Watch parents of children with CF and a respiratory therapist talk about:
People with CF typically take pancreatic enzyme supplement capsules with every meal and most snacks to improve absorption of vital nutrients. Recently approved drugs for CF include ivacaftor (Kalydeco®) and lumacaftor/ivacaftor (Orkambi®), which treat the underlying cause of CF in a small number of people with specific mutations of the CF gene. All other CF therapies available today treat the symptoms of CF. Work is ongoing to find additional CF therapies that could help improve key symptoms of the disease by targeting the disease at its root. Learn more about treatments and therapies for CF. In addition to daily treatments and regular visits with your care team, caring for someone with cystic fibrosis means being “germ smart.” For people with CF, some germs can cause serious lung problems, including lung infections. That's because thick, sticky mucus builds up in their lungs, allowing germs to thrive and multiply. Germs are all around us, but there are steps you and your family can take to avoid germs and help keep your child healthy. Basic ways to help your child avoid germs include teaching them to:
Listen to four families discuss:
Learn more about germs and bacteria that are especially dangerous for people with CF and what you can do to be germ smart. Listen to CF clinicians, parents, and people with CF discuss:
Proper nutrition -- including a high-fat, high-calorie diet rich in vitamins and minerals -- is vital for people with cystic fibrosis, especially children. Thick mucus often gets in the way of proper digestion and the disease can rob children of the nutrients they need to grow. To help compensate, almost everyone with cystic fibrosis needs to take pancreatic enzyme supplements with meals and snacks. Taken by mouth, the enzymes go to work in the intestines to help digest food so it can be absorbed by the body. If enzymes and proper nutrition alone aren't enough, a feeding tube may be required. Watch parents of children with CF and a dietitian talk about:
Learn more about how proper nutrition can help treat CF. Today's insurance landscape can be hard to navigate, but we are dedicated to helping you get the coverage you and your family need.
Learn more about navigating insurance. Most people with cystic fibrosis live a normal daily life, with the challenge of incorporating daily medications, airway clearance techniques, and other treatments and medications. Children with CF grow up, go to school, have friends, have hobbies, and can exercise and play sports. Many go to college. Many marry and have families. In addition to managing your child's treatment and care, it helps to understand what to expect as your child grows. Watch parents of children with CF and their kids discuss:
Caring for Your InfantAs the parent of an infant with CF, you may have many questions and may be feeling a range of emotions. In addition to comprehensive care and medical support, the Cystic Fibrosis Foundation offers the "Pathways to Lifelong Health" video series for parents of babies recently diagnosed with CF. This series includes perspectives from both CF care team members and CF parents and covers topics including diagnosis, nutrition, airway clearance, balancing daily life, and CF care and support. Watch the video series here. Learn more about recommended clinical care guidelines for newborns to 5-year-olds, including a schedule to guide care teams. Working With Your Child's SchoolCaring for and treating cystic fibrosis doesn't just happen at home. It happens every day, everywhere your child goes -- including day care and school. Letting a day care or school know your child has CF is a personal decision. You do not have to disclose this information, but enlisting the help of educators can make it easier for your child to achieve their academic goals while maintaining their health. We offer a number of resources for parents of children with CF who are starting school, including information about how to educate teachers about the disease, a letter template for informing a school that your child has CF, what to do when there is more than one child at school with CF, and more. Watch families, a school health coordinator, a care provider, and a social worker talk about:
Talking to Your Child About CFA child's first questions about CF often come after starting school. He or she sees that other children do not take enzymes or do daily airway clearance. They may be asked questions about CF by other children, adults, or teachers. The goal of telling your child about CF is to help your child know what CF means and why eating right, taking enzymes and other medicines, and doing airway clearance is important. Another goal is to get your child ready to do his or her own care. Children should be taught about CF as soon as they can understand. What you say to your child depends on his or her age, personality, and ability to understand. If you have questions, ask your CF care team for help. Watch the families of children with CF discuss:
To learn more about how people with CF can go on to lead long, fulfilling lives, watch an adult with CF discuss:
Caring for anyone with a long-term disease -- especially if that person is your child -- is stressful. Parents of children with cystic fibrosis are more likely to experience anxiety, depression, or both compared to parents in general. Parents of a child with CF can focus so much on caring for their child that they do not notice when they are beginning to have problems themselves. But you are not alone. If you recognize signs of stress, talk to your child's care team and your primary care provider so they can work with you on ways to reduce it. This way, you can avoid developing more serious depression and anxiety. Learn more about coping while caring for someone with CF. *** Reference to any specific product, process, or service does not necessarily constitute or imply its endorsement, recommendation, or favoring by the Cystic Fibrosis Foundation. The appearance of external hyperlinks does not constitute endorsement by the Cystic Fibrosis Foundation of the linked websites, or information, products, or services contained therein. Information contained on this site does not cover all possible uses, actions, precautions, side effects, or interactions. This site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment. FDA-approved drug information is available at dailymed.nlm.nih.gov/dailymed.
Caring for a Child With CF | Parents & Guardians |
A nurse is teaching home management to the parents of a preschooler who has cystic fibrosis
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