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Hi, my child was diagnosed with rare hypersensitivity disorder, Heiner Syndrome. What can I expect further on concerning this specific disease? Is there a way to lose hypersensitivity?

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Heiner syndrome is a hypersensitivity reaction to cow’s milk. It effects children from 6 months to 2 years. Children usually develop a chronic runny nose, recurrent ear infections, gastrointestinal discomfort, bleeding in lower pulmonary area and stunted growth. The exact frequency of the Heiner Syndrome is not known. Children with Heiner syndrome have a typical presentation characterized by nasal congestion, recurrent ear infections, insufficient weight gain, chronic cough, sputum produced from coughing, anemia, hypoxia, breathing difficulties.
Cow’s milk and all milk products must be removed from the child’s diet. Corticosteroids are used because they suppress the hypersensitive immune system, and symptoms like iron deficiency, nasal congestion are appropriately treated.
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hi, i have the disease also and there is no way to lose the hypersensitivity you just can't have milk products ever that's what my doctors told me. I had an attack when I was three and my lungs were bleeding since then I've never had milk products i'm 20 yrs old now so i've had to deal with this for a long time.
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Hi, my child was just recently diagnosed with Heiner's Syndrome. I would like to know if there is a support group that I can go to a web site where I can learn more things about this Syndrome. I'd also like to know what others have experienced and what type of diet they have been on. Thank you very much for your time.
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I was diagnosed at age 3 with Idiopathic Pulmonary Hemosiderosis, I am now 35. They never called it specifically Heiner syndrome but I was put on a milk free diet (along with prednisone and Immuran) and it seemed to work. I had a strong correlation with having an episode when I had milk. I just found ***edited by moderator*** web addresses not allowed. Hope this helps!
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