Sarcoidosis

What are the signs and symptoms of sarcoidosis?

The signs and symptoms of sarcoidosis depend on which organ systems are involved and how many are involved. Signs and symptoms can be quite different from person to person. They may include:

• General symptoms: In children, it is common to have symptoms such as a fever, fatigue, poor appetite and aches and pains.
• Skin: Children commonly have a skin rash or bumpy painful red rashes over the shins.
• Lungs: If the lungs are involved, a child may have a cough, wheezing and shortness of breath.

Some children may not have any symptoms and sarcoidosis is found during a chest X-ray that is done for another medical reason.

What tests are used to diagnose sarcoidosis?

We can diagnose sarcoidosis by doing a biopsy on an affected organ that shows the granuloma formation. In children, the biopsy is commonly taken from the location that is easiest, safest and most convenient. It is important to exclude other diseases that can also have multisystem granulomas such as tuberculosis, atypical tuberculosis, fungal infections such as histoplasmosis or blastomycosis, drug reactions or other immunologic reactions such as hypersensitivity pneumonitis.

A diagnosis of sarcoidosis requires the presence of specific symptoms, signs, tissue biopsy from an affected organ system and exclusion of other conditions that may be similar in appearance.

Other tests

When there is concern for lung involvement, we commonly order a chest X-ray. The results are usually available the same day.

For children with suspected pulmonary sarcoidosis who are 5 years of age and older, we commonly perform pulmonary function testing. This consists of blowing hard and fast into a computer with nose clips on. The results are also available the day of the test.

For children 8 years and older with suspected pulmonary sarcoidosis, we also perform lung volume measurements and diffusing capacity tests. These tests require sitting in a pressurized, clear, air-tight box and doing simple breathing exercises. The results of the lung volume and diffusing capacity tests are also available the same day of the tests.

Depending on the results of the chest X-ray and the breathing tests, we may order a CT scan of the chest or other organs.

How do we make a diagnosis for sarcoidosis?

The diagnosis of sarcoidosis can be challenging and often requires the expertise of several specialties including pulmonology (lung doctors), infectious diseases, rheumatology, radiology, ophthalmology (eye doctors), dermatology (skin doctors) and pediatric surgery. Your child’s primary care physician can refer your child to our program for sarcoidosis evaluation and treatment. We will coordinate care with the group of specialists that is most appropriate for your child. Collectively, we can diagnose sarcoidosis and exclude other diseases.

How is sarcoidosis treated?

The treatment depends on the severity of illness and the organ systems involved. Children with mild symptoms may not need any treatment and the sarcoidosis may resolve on its own.

For children with more significant symptoms and risk for impairment, medicines called corticosteroids are commonly recommended, usually with good results. After the sarcoidosis has improved, the corticosteroids can be tapered and stopped. Rarely, other medicines may be needed. The multidisciplinary specialty teams involved in your child’s care will manage any medicines your child needs.

Why choose us for treatment of sarcoidosis?

Children’s Hospital Colorado has all the specialty services available that may be necessary to correctly diagnose sarcoidosis from simple, single-organ disease to severe, multiorgan disease. We work collaboratively in a multidisciplinary setting to provide the care your child needs. We are also familiar with traditional and newer treatment options for sarcoidosis so we can offer your child the latest treatments for sarcoidosis.

• The Foundation for Sarcoidosis Research is a nonprofit organization dedicated to finding a cure for sarcoidosis and to improving care for sarcoidosis patients by investing in innovative, patient-centered research efforts and providing educational resources, support and opportunities to accelerate research to patients worldwide.
• The American Lung Association is the leading organization working to save lives by improving lung health and preventing lung disease, through research, education and advocacy.