Expert Care for Rare Diffuse Lung Diseases

The pediatric pulmonology specialists at University Hospitals Rainbow Babies & Children’s provide expert care for a group of rare lung diseases that can affect babies, children and teenagers, most often known as childhood interstitial lung diseases or CHILD Syndrome. Some of these rare diseases are identified within the first few months of life – and our team is available to help parents with concerns or for referrals from primary care physicians or a range of pediatric specialists across the region.

Many new discoveries about chILD have happened recently and continue to happen all the time. Some new lung issues in children have actually only been identified in recent years and it is important for your child to see a pediatric pulmonary expert for any lung or breathing issues, but especially for rare or diffuse lung diseases or for lung diseases that have thus far been difficult to diagnose. Symptoms of lung disease may be very obvious or can be harder to notice, such as mild shortness of breath or mild cough. Our team has the experience and expertise to help you through the often somewhat long, step-by-step process to determine the exact type of lung disease and determine the best treatment options. We will carefully review each patient’s history, environmental conditions and use imaging tests such as chest computed tomography (CT), specialized genetic tests, lung function tests or perform a lung biopsy to accurately diagnose the specific condition.

Complex Lung Disease Management Experience

With a full range interstitial lung disease treatment capabilities, we provide the most comprehensive care, including lung transplant, if necessary. Because of our vast experience across any pulmonary disease, our team has the knowledge to also consider any uncertainties with pulmonary function and are prepared to respond efficiently to any issues that may change unexpectedly.

For patients with lung-specific issues or more complex care disease management when multiple organs are affected, our team provides the answers parents need. For example, some of these rare lung diseases can lead to changes in the blood vessels in the lungs and patients can develop pulmonary hypertension. At UH Rainbow Babies & Children’s, we have a specialized pediatric pulmonary hypertension program so our pulmonary specialists can address these issues immediately. Testing may identify a new genetic form of the specific diffuse lung disease, so we have genetic specialists who collaborate to harness the information from these new discoveries.

Collaborative Network of Pediatric Pulmonary chILD Specialists

Our dedicated team of pediatric pulmonary specialists at UH Rainbow Babies & Children’s are part of a cooperative network of specialists across the nation called chILDRN which is the Children’s Interstitial and Diffuse Lung Disease Network. Rainbow collaborates as part of this network to provide the most up-to-date diagnostic and treatment paths for children of any age with these rare lung diseases. This allows us to work more efficiently across this network of nationally acclaimed pediatric pulmonology specialists and provide solutions that may be more effective, including complex medication management or oxygen therapy support.

Nation’s First Childhood Interstitial Patient Registry

As a major building block in research to better understand opportunities and innovative treatments for these rare lung diseases, our team is a member the nation’s first interstitial patient registry which is called the National Registry for Childhood Interstitial and Diffuse Lung Diseases. As we enroll patients into this important database, we have access to detailed information over time that will help guide our team, as well as patients and families, of what to expect and the most optimal path of care for each individual condition.

Research Excellence for Rare Pediatric Pulmonary Diseases

Our depth of pediatric pulmonology resources at UH Rainbow Babies & Children’s, including genetic and epidemiologic research, allows us to better direct care based on critical areas, including:

  • Advanced genetic testing to identify specific causes of lung diseases
  • Airway or lung cell analysis to determine treatment response
  • Characterize the lung disease and better understand interventions
  • Measure outcomes of treatment on lung function
  • Pulmonary alveolar proteinosis (PAP) research
  • Pulmonary function measurement and monitoring

Multidisciplinary Approach to Improve Lung Function

As a dedicated children’s hospital, our team at UH Rainbow Babies & Children’s Hospital has the expertise of an entire team to help improve your child’s lung function, including pediatric pulmonary rehabilitation. Our team provides expert care for even the youngest patients that are born with lungs that have not formed properly – as well as children and teenagers, including:

  • Pediatric geneticists
  • Pediatric immunologists
  • Pediatric nutritionists
  • Pediatric pathologists
  • Pediatric pulmonologists
  • Pediatric radiologists
  • Pediatric rheumatologists
  • Pediatric surgeons

For any area of pediatric pulmonary care, including the most complex diseases, our team can help. We work with patients and families, including respiratory therapists, Child Life specialists and various support groups, to find the resources to improve the quality of life for your child. If you have questions about our pediatric pulmonary care, please contact one of our team members.

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