Children with cystic fibrosis may experience more frequent lung and sinus infections, delayed growth, and large, greasy, irregular bowel movements.

child with cystic fibrosis symptoms being examined by a healthcare professionalShare on Pinterest
The Good Brigade/Getty Images

According to the Centers for Disease Control and Prevention, cystic fibrosis affects 35,000 people in the United States. Individuals with this condition have a buildup of thick, sticky mucus around their lungs and digestive tract.

Although some individuals may not display symptoms of cystic fibrosis until closer to adulthood, many children with cystic fibrosis experience frequent lung infections and problems with their digestive tract. Awareness of cystic fibrosis symptoms and the treatment options available can help parents of children with cystic fibrosis improve their quality of life.

Symptoms of cystic fibrosis in children can include:

  • salty skin
  • shortness of breath or wheezing
  • constant coughing that may include mucus or blood
  • frequent lung and sinus infections
  • stomach pain and bloating
  • large, greasy, foul-smelling stools or constipation
  • inability to gain weight and delayed growth

Children with cystic fibrosis may develop:

Individuals with cystic fibrosis are more likely to develop:

Inherited genetic mutations cause cystic fibrosis. It requires both parents to pass along a genetic mutation for cystic fibrosis. Individuals who receive a genetic mutation from only one of their parents are carriers of cystic fibrosis but won’t actually have the condition.

Cystic fibrosis results in the formation of thick, sticky mucus around the lungs and pancreas. As this continues to build up, it can lead to symptoms because of breathing problems and difficulty breaking down food. Damage to organs can also make individuals more likely to get infections.

There is currently no cure for cystic fibrosis, but there are treatments to reduce symptoms and help prevent related complications.

Cystic fibrosis transmembrane conductance regulator (CFTR) modulator therapies are FDA-approved medications that help treat individuals with CF who have specific CFTR gene mutations. For individuals with identified CFTR mutations, these medications alone can significantly decrease the need for airway clearance methods and relieve many CF symptoms. CFTR modulator medications include:

  • Trikafta (elexacaftor/tezacaftor/ivacaftor)
  • Symdeko (tezacaftor/ivacaftor)
  • Orkambi (lumacaftor/ivacaftor)
  • Kalydeco (ivacaftor)

Treatment for cystic fibrosis in children often focuses on:

  • opening and clearing airways
  • ensuring the absorption of sufficient nutrients
  • addressing infections and other related health conditions

The doctor may recommend special therapy devices, techniques, and regular exercise to help clear out mucus. They may also recommend special diets and supplements to ensure sufficient nutrient absorption.

For children ages 12 years and older, doctors consider CFTR modulators as the first-line treatment since they can significantly reduce the need for airway clearance methods and reduce or eliminate a majority of other symptoms.

Your child’s doctor will likely recommend additional medications to:

In cases of severe lung or liver damage, an organ transplant may be necessary.

More than 50% of individuals with cystic fibrosis live to be older than 40 years. Because of medical advances, children born with cystic fibrosis are likely to live even longer. However, many factors impact an individual’s life span. Early diagnosis and treatment of cystic fibrosis can improve an individual’s outlook.

Will all my children have cystic fibrosis?

If both parents are carriers of a cystic fibrosis gene mutation, there is a 25% chance that a child born to them will have cystic fibrosis. There is a 50% chance that any child born will be a carrier for cystic fibrosis, no matter how many children they have.

Can my child with cystic fibrosis play with other children with this condition?

According to an old study on infection control, individuals with cystic fibrosis should avoid contact with one another. They are prone to serious infections that are not common in others. Keeping distance reduces the risk of cross infection. Social media and online communities can offer opportunities to connect safely.

When will my child receive the diagnosis of cystic fibrosis?

Babies in the United States have their blood tested for evidence of cystic fibrosis shortly after birth. After this, doctors may use additional testing, like a sweat test, to confirm a cystic fibrosis diagnosis. Healthcare professionals may perform neonatal testing before the baby’s birth if parents are known to be carriers of cystic fibrosis.

Children with cystic fibrosis may experience a range of symptoms depending on the amount of mucus building up around their lungs and digestive tract. These symptoms can include frequent lung infections and various digestive problems. Children with cystic fibrosis may also have reduced height and slow weight gain if they are unable to absorb nutrients properly.

While there is currently no cure for cystic fibrosis, a range of treatment options are available to help treat your child, depending on the symptoms they are experiencing. Early diagnosis and treatment can lead to better outcomes for children with cystic fibrosis.