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If your child is diagnosed with cystic fibrosis (CF), you can count on Children’s Health℠ to manage all aspects of their condition with a caring multidisciplinary team of highly-trained experts. We will help your child find ways to fit CF into everyday life, rather than having his or her life revolve around the disease.
Cystic fibrosis (CF) is an inherited genetic condition that affects mucus production, leading to lung infections and breathing difficulties. Normally, mucus is a slippery, watery substance that keeps the lining of organs moist so they can function properly. With CF, mucus becomes thick and traps particles in the lungs, causing infections and labored breathing. In addition, CF can cause problems with the pancreas, liver, intestines and sex organs.
The severity of the disease can differ from child to child, even in the same family.
Symptoms in infants (birth to 1-year)
Symptoms in children 1-year and older
Respiratory symptoms
Digestive symptoms
Most babies are screened for cystic fibrosis (CF) as newborns in the hospital, with a blood sample taken from their heel. In Texas, newborns are screened for a protein that can indicate CF.
If your child receives a positive screening, we will admit them to the Children’s Health Claude Prestidge Cystic Fibrosis Center within 24-48 hours.
The next step is a sweat test, a painless test in which sweat is collected from the skin and analyzed for salt content. A high chloride content points to a diagnosis of cystic fibrosis (CF). If the sweat test is positive, we will see your child within three days to develop a care plan as soon as possible.
Some babies are diagnosed with the disease in utero based on genetic testing. Parents can speak to counselors at the clinic even before their baby is born. If children aren’t diagnosed at birth, most are diagnosed by the age of 2.
Cystic fibrosis (CF) is a congenital disease that is present at birth. It occurs when a child inherits a faulty gene from each parent. The parents likely do not have the disease.
Treatment begins within days of diagnosis and includes:
Follow-up care
If your child experiences a flare-up that requires hospitalization, our team will be there to provide the care they need and answer all of your questions.
Our multidisciplinary approach to treating cystic fibrosis gives your child access to the best care possible. All of the specialties your child needs are located under one roof for convenience and peace of mind. At Children’s Health, we not only treat the disease, but also closely monitor weight and nutrition so they can live their healthiest life possible.
Both a pulmonologist and gastroenterologist direct the Children’s Health Claude Prestidge Cystic Fibrosis Center, ensuring coordinated care for both lung and digestive health.
In addition, your child will have a dedicated care team that includes:
Pulmonary function lab (PFT) - As part of developing effective treatments that work specifically for your child, we will use our state-of-the-art pulmonary function lab. By coming directly to your child’s exam room, we ensure the highest level of infection control.
Cystic fibrosis therapeutics development network - At Children’s Health, your child will have access to cutting-edge treatments and clinical trials. We participate in the Cystic Fibrosis Therapeutics Development Network, the largest cystic fibrosis clinical trials network in the world. Sharing information collaboratively with other network treatment centers has helped us continuously improve patient outcomes – our rates of cystic fibrosis flare-ups have fallen while our patients’ pulmonary function has risen.
Cystic fibrosis is a chronic condition and cannot be cured, but with our comprehensive, cutting-edge treatments, we fully expect your child to transition from our pediatric clinic to an adult clinic someday and live the healthiest life possible. More and more adults are living successfully with CF.
Yes, with adjustments. We expect your child to have a normal life and find a way to fit cystic fibrosis into their daily living, rather than have all of their activities revolve around the disease.
CF does not affect cognitive ability. They can go to school, play sports, work and attend overnight camps, for example.
Managing the disease will take time, effort and planning, but we will be your partners every step of the way.
The number of adults living successfully with cystic fibrosis has been increasing each year. With close monitoring and a consistent care plan, adults are able to manage the disease to participate in normal everyday activities..