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What

: Heiner syndrome is a form of primary pulmonary hemosiderosis or bleeding in the lower respiratory tract caused specifically by a hypersensitivity to cow’s milk. Children usually develop a chronic runny nose, recurrent ear infections, gastrointestinal discomfort, and stunted growth.

Who

Heiner syndrome usually affects children ages 6 months to 2 years and has an equal incidence in boys and girls. The exact frequency of the disorder is not known but it is a well-recognized condition. There is no known racial predilection.

Signs and Symptoms

Children with Heiner syndrome or pulmonary hemosiderosis generally present with milder symptoms than adults and these symptoms can be either slowly evolving or have a rapid onset. Children with Heiner syndrome have a typical presentation:

• Chronic rhinitis (inflammation of the nasal passages) noted by nasal congestion
  
• Recurrent ear infections
• Poor weight gain
  
• Chronic cough not responsive to inhaler medication
  
• Sputum produced from coughing with or without streaks of blood
  
• Anemia from loss of blood
  
• Poor energy level from anemia
  
• History of cow’s milk intake before 1 year of age
  
• Occasional acute breathing difficulties from bleeding.

Possible Causes

The condition is caused by a hypersensitivity reaction against cow milk proteins leading to the production of immune complexes (clusters of immune proteins) that harm the lung.

Diagnosis

Heiner syndrome is diagnosed by the presence of a good history for cow’s milk intolerance and specific blood tests that look for immune proteins or antibodies against the cow milk proteins. The complete blood count will reveal anemia and elevated levels of eosinophils or allergic blood cells in the body, which can also help confirm the diagnosis. A chest x-ray may reveal the extent of lung involvement while a procedure known as a bronchoscopy will likely be done to visualize the lower airway and to collect specimens that can be analyzed for infection. Further investigations including CT scans of the chest and specialized lung function tests may be ordered.

Treatment

Heiner syndrome is treated by removing cow’s milk and all milk products from the child’s diet. Medications that suppress the hypersensitive immune system such as corticosteroids are occasionally used. The anemia associated with the chronic bleeding can be treated with iron supplements.

Prognosis

With rapid removal of milk products children will have rapid resolution of their symptoms. Growth returns to normal in a matter of months.

Connect with other parents

In the spirit of community and support, Madisons Foundation offers the unique service of connecting parents of children with rare diseases. If you would like to be connected to other parents of children with this disease, please fill out this brief form.

Weblinks

Nutramed.com
general information on cow s milk allergy.

ECureme.com protein_Allergy.asp ">
Thorough description of cow s milk protein allergy.

American Academy of Allergy, Asthma, and Immunology

http://www.aaaai.org/media/resources/academy_statements/practice_papers/adverse_reactions_to_foods.asp
Formal guidelines for diagnosing and treating food allergies.

Google Search for Heiner Syndrome

References and Sources

Dearborn DG, (2004). Pulmonary Hemosiderosis. In: Behrman RE, Kliegman RM, Jenson HB (eds) Nelson Textbook of Pediatrics, 17th ed. WB Saunders. p 1456-7. EMedicine article: Napchan G http://www.emedicine.com/ped/topic970.htm