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  The Cain Foundation Forum  Discussion Topi...  Personal Storie...  BOR Mom with Two BOR Teenagers
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New Post 5/5/2013 8:27 AM
  sandship
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BOR Mom with Two BOR Teenagers 

 Hi all,

I am a 50 year old US citizen with BOR.  No apparent renal involvement however.  Brancial cyst removed when I was 2.  My mother had a hard time convincing doctors that I had a hearing loss, because I compensated very well.  It was not until I was 9 that I got a hearing aid.  The audiologist and ENT thought it would do no good to aid me in my worse ear.  However, when I was in law school (late 1980s), hearing aids had improved to the point that I was able to get one.  I've worn two hearing aids ever since.  

When my first child, Jane, was born in 1995, I demanded that her hearing be tested.  At that time universal hearing screens were not performed in our state.  She failed the test.  Fortunately, the neonatalogist had been a geneticist.  He recognized her symptoms as being indicative of BOR.  [I had never been diagnosed since the syndrome was not identified until 1978 when I was 15.]  At three months Jane was fitted with two hearing aids.  Her brancial cyst was removed when she was about seven months old.  Her hearing loss progressed in her left ear and when she was eight she received a cochlear implant in that ear.  She has no renal involvement of which we are aware.

Her brother Will was born in 1997 and also has BOR.  He was fitted with two hearing aids at two months old.  He had a branchial cyst on each side of his neck which become infected when he was about three months old, so they were removed a few weeks later.  His tear ducts were unblocked when he was about three.  However, until he was a teenager, one eye leaked when he ate.  Additionally, Will's ears protruded from his head at nearly a 90-degree angle, making wearing his hearing aids difficult.  Consequently his ears were pinned when he was seven.  Again, there is no renal involvement.

Each of the three of us has a narrow palate that has required widening before we could be fitted with braces.  We have pits beside our ears as well.

None of us has balance or muscular issues.  The children are exceptionally bright, lovely young people. Well, I may be a bit biased there.

They also have a younger sister who does not have BOR.  

I'm happy to answer any questions for those of you with younger children.  

 
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