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Cystic Fibrosis in Children

At OSF HealthCare Children's Hospital of Illinois, we are dedicated to providing compassionate, family-centered care for children with cystic fibrosis, ensuring they can live healthy and fulfilling lives.

What is Cystic Fibrosis?

Cystic fibrosis (CF) is a genetic disorder that that can affect multiple systems including pulmonary and digestive, leading to persistent respiratory problems and difficulty digesting food. Cystic fibrosis in children happens because of changes in a gene called CFTR, which affects how salt and water move in and out of cells. This causes thick, sticky mucus to build up in the lungs, making it hard to breathe and leading to frequent lung infections. It can also block the pancreas, making it difficult for the body to digest food. While there is no cure yet, new treatments are available that help manage pediatric cystic fibrosis symptoms and improve quality of life.
Baby Being Examined by a Nurse

What to Expect at Your Visit?

During a visit for cystic fibrosis, our team of respiratory therapists, nurse and doctors will conduct thorough assessments, including lung function tests, a sweat test and nutritional evaluations. We’ll discuss your child’s symptoms, treatment plans and any concerns you may have. Our goal is to work together with you and your child to care for their unique needs.

Meet Our Providers

Cystic Fibrosis Symptoms in Children

Common symptoms of childhood cystic fibrosis may include:

  • Difficulty gaining weight or growing
  • Frequent lung infections
  • Intestinal blockages
  • Loose, greasy stool
  • Persistent cough
  • Salty-tasting skin
  • Wheezing or shortness of breath

CFTR-Related Metabolic Syndrome (CRMS)

CRMS is a condition where a newborn screening suggests possible cystic fibrosis, but follow-up tests are unclear. This happens when sweat test results fall between 30 and 60, and fewer than two CF gene mutations are found. Kids with CRMS usually have milder symptoms than those with cystic fibrosis, but regular check-ups with a CF care team are still important.

Cystic Fibrosis in Infants

Cystic fibrosis can be diagnosed at birth through a newborn screening. Infants may present symptoms such as meconium ileus – a bowel blockage in newborns that occurs when the baby's first stool is too thick and sticky, preventing it from passing through the intestines – or failure to thrive. Early diagnosis allows for timely interventions to support healthy growth and development.

Girl Sitting at Desk in School

Attending School with CF

Managing cystic fibrosis at school is a team effort that prioritizes your child’s well-being and success. Parents, teachers and health care providers work together to support your child and create an inclusive environment.

Cystic Fibrosis School Services:
  • Visiting School with Your CF Team
  • IEP and 504 Plans
  • Elementary through High School Accommodations
  • College Accommodations

Cystic Fibrosis Family Advisory Board

The Cystic Fibrosis Family Advisory Board includes family members who work with CF staff, providers and counselors. They focus on improving patient and family care, developing quality improvement plans and supporting families with new diagnoses.

General Resources

Resources

CF Center Newsletters

Download the newsletters from our Cystic Fibrosis Center to assist you in your daily CF care along with learning about news, research and local CF events.

Daily Self Care Guidelines

The Cystic Fibrosis Foundation has identified several daily activities that promote long-term health in children with CF. We strongly recommend that you perform these activities daily and become knowledgeable about how these benefit your child’s health. We will help you learn the best techniques for your child and why they work.

Get the guidelines

Clinical Care Guidelines

Care standards and guidelines for CF are set by the Cystic Fibrosis Foundation. These guidelines are based on extensive medical and scientific evidence and are developed from current research specific to CF. The Cystic Fibrosis Foundation is committed to finding a cure for CF and promoting health care that improves quality of life.

As an accredited cystic fibrosis care center, we follow the care guidelines set by the Cystic Fibrosis Foundation. 

Visit the CFF website for the most up-to-date clinical care guidelines for everything from diagnosis and age-specific guidelines to infection prevention and respiratory care guidelines.

When to Call

Please call the Cystic Fibrosis Clinic at (309) 624-6565 if you experience the following:

  • Abdominal pain
  • An increase in sputum amount or a change in sputum color
  • An increase in cough or a wheeze
  • New or increased shortness of breath
  • New or increased blood in the sputum
  • New or increased sinus pain, head congestion or headache
  • Recent decrease in energy, feeling bad
  • Fever, chills or sweats
  • Have missed school or work
  • Poor appetite
  • Have lost weight
  • Pain in chest and/or back with or without coughing
  • Higher than usual glucose readings in CF-related diabetes

Frequently Asked Questions

How is cystic fibrosis diagnosed and treated?

Pediatric cystic fibrosis is diagnosed through newborn screening, genetic tests and sweat tests. Treatment typically involves medications, physical therapy and nutritional support tailored for childhood cystic fibrosis.

What dietary recommendations are important for managing cystic fibrosis?

A high-calorie, high-fat diet is crucial for children with cystic fibrosis to gain weight and receive necessary nutrients for their health.

Can children with cystic fibrosis participate in sports?

Yes, children with childhood cystic fibrosis can participate in sports. They should follow their provider’s advice and manage their condition during activities.
Pediatric Pulmonology

Ask for a Referral

Ask your child's primary care doctor to refer you to a pediatric pulmonologist at OSF Children's Hospital of Illinois. Need a primary care provider? Browse our directory.
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Featured Providers

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Ossama I. Ikladios, MD

Pediatric Pulmonology,

Pediatric Sleep Medicine,

Pulmonology,

Sleep Medicine,

Critical Care Medicine

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Joseph R. Mackey, MD

Internal Medicine

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Heather M. McLauchlan, MD

Pediatrics

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Robert J. Lucia, APRN

Pediatric Pulmonology,

Pediatric Sleep Medicine

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Harry C. Yuan, DO

Pediatric Pulmonology

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Kayla M. Freeburg, APRN

Pediatric Pulmonology

Location

OSF Children's Hospital of Illinois (Peoria)

OSF Children's Hospital of Illinois - Cystic Fibrosis

530 Northeast Glen Oak Avenue
Peoria, IL 61637