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I have a son. He is 4 years old. Two years ago I noticed that something was not in order with him. I even wanted to take him to a doctor. Everyone was telling me that he is normal and that there is nothing to be worry about. Now I know that he has autoimmune hearing loss, but I don't know anything about this condition.

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My daughter has autoimmune hearing loss as well. She is now 9 years old. Hers doctor gave us some information about this. Disorders of the sense of hearing, especially autoimmune are usually found in kids. It seems to be a progressive disease without cure. So we, you and me, have only one possibility, and it is a special school for our kids.
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My son is 10 and is now undergoing tests to determine if his hearing loss is autoimmune related. About 2 years ago he was tested at school. At the request of the school I brought him to an ENT and he was tested again. They found some hearing loss in his right hear, but found no cause for it. Just last month his school tested him and again I was asked to follow-up with his ENT. The right ear is progressively getting worse and now the left is failing. Still there is no visible cause for the hearing loss. He's having blood work done and they are preparing a battery of tests to see if it's autoimmune related or something genetic. If the genetic test comes back positive, his younger brother will have to be tested.

The school system is working with us to see exactly what they can do to accomodate him - special amplifiers, etc. You should see if your school district is willing to work with you.

At this point I'm not sure how these tests are going to come out, but I hope that there is some type of answer to his hearing loss.
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