Childhood Interstitial Lung Disease

Interstitial lung disease (ILD) is a general term for a group of rare lung disorders that make it hard to breathe. Many of these diseases can be difficult to diagnose and manage, and they can affect people at any age.

Lucile Packard Children’s Hospital Stanford has more pediatric pulmonary specialists in one center than any other hospital in California, and they have expertise in diagnosing and treating patients from infancy through adulthood with any lung condition. We’re proud to be the highest-ranked pediatric pulmonology center on the West Coast, according to U.S. News and World Report.

Diagnosing these rare disorders correctly is critical, and our team of experts has access to a full suite of diagnostic tools, including infant pulmonary function testing, bronchoscopy and spirometry. After diagnosis, our multidisciplinary team of pediatric pulmonologists, pathologists, radiologists and nutritionists work together to develop a personalized care plan for each patient and family.

Our hospital is the only member of the Children’s Interstitial and Diffuse Lung Disease Research Network (chILDRN) in Northern California, which means our physicians and researchers can collaborate with their peers across the country to find better ways to diagnose and treat these diseases. We have a growing research team of physicians with expertise in the specific lung cell types that give rise to childhood rare lung diseases. Carol Conrad, MD, director of the Lung and Heart–Lung Transplant Program, is developing methods to understand post-transplant lung rejection syndromes. Christin Kuo, MD is an international expert in neuroendocrine cells, a specialized cell type that is abnormally increased in neuroendocrine hyperplasia of infancy (NEHI). She is studying how these rare cells develop and function with the goal of improving treatment and management of this disorder and other lung diseases with abnormal neuroendocrine cell function.

Conditions We Treat

At Stanford Children’s Health, our team of pediatric pulmonologists — the largest in California — has experience treating many interstitial and diffuse lung disorders, including:

  • Lung developmental disorders
    • Pulmonary hypoplasia
    • Neuroendocrine hyperplasia of infancy (NEHI)
    • Pulmonary interstitial glycogenosis (PIG)
  • Surfactant dysfunction disorders
    • Genetic disorders of surfactant-associated genes
  • Disorders related to systemic disease processes
    • Systemic lupus erythematosus
    • Polymyositis
    • Dermatomyositis
    • Systemic sclerosis
    • Systemic juvenile idiopathic arthritis

Treatment Options

Treatment options depend on the diagnosis. Most interstitial or diffuse lung diseases do not yet have a cure. However, many of these conditions can be successfully managed with supplemental oxygen and careful nutrition monitoring, allowing patients with these conditions to live otherwise healthy and active lives.

Some rare lung diseases may require a lung transplant, and those patients are in the best hands at Lucile Packard Children’s Hospital Stanford. Our Pediatric Transplant Center is the only pediatric lung transplant program on the West Coast.

Refer a Patient

Childhood ILD comes in many different forms, and its signs and symptoms may vary widely. Because symptoms are nonspecific, initial evaluation should exclude more common causes of presenting signs and symptoms, such as aspiration, sinusitis, cystic fibrosis, pulmonary infection and structural airway abnormalities. Possible indications for referral include:

  • Tachypnea of unclear etiology
  • Chronic cough
  • Persistent wheezing that’s not responsive to medications
  • Crackles on auscultation
  • Hypoxemia
  • Failure to thrive
  • Abnormal chest x-rays or CT scans

For more information or to refer a patient, please call (844) 724-4140.