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  The Cain Foundation Forum  Discussion Topi...  General  Where in the world is BOR Syndrome?
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New Post 5/5/2013 8:44 AM
  sandship
2 posts
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Re: Where in the world is BOR Syndrome? 

 My daughter, son, and I have BOR.  We are in Hartwell, GA, USA.

 
New Post 7/4/2013 3:16 AM
  LisaD
1 posts
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Re: Where in the world is BOR Syndrome? 

 Hello, 

I just found this website again in researching BOR syndrome each time one of my boys seems to have a new issue.  I have a son who is 10 years old named Liam with BOR and a 3 year boy named Gavin with BOR syndrome.  We did not discover it was BOR syndrome until my second son was born.  My first had hearing loss and EVA (but this all came about after may visits saying he had fluid in his ears, needed tubes, etc.) , but that is all they thought it was.  When my second was born he was born with brachial cleft cysts (as was I 40 years ago, but they did not know what this was - so they just sent me home with fluid leaking out of my neck).  When I was pregnant with Gavin I just had this feeling because both boys had hydronephrosis in utereo.  It was Liams audiologist who mentioned BOR syndrome to me several months before we had Gavin.  When I was researching it I said to myself this is what we have, I have pits on one side, Liam has pits on both and hearing loss.  When Gavin was born he had brachial cleft cyst, facial asymmetry, significant skin tag on left ear and that ear was much smaller than the other,  and ear pit on right side.  It was in the operating room that the nurse came up to me and said it looks like BOR syndrome - she knew because she had it too.  Only person I have ever met face to face with this syndrome - Most doctors don't know much about it.  Gavin was also severly tongue tied.  He had brachial cleft surgery, plastic surgery for his ear.  He had a MRI that found the enlarged vestibular aqueduct on right side, which is where all three of us have it, but they also found at that time (1 years old) he had a choleastoma and a dermoid tumor in his bad ear.  We never would have caught it if not for the MRI.  After the surgery we were told that the bones in that ear were deformed and could not be fixed.  

Flip it now I have two wonderful, full of energy, funny, fresh boys.  They have there challenges, but to be honest I was glad when the second was born hard of hearing and needed hearing aids too because they are the same and so proud.  We are learning sign language with the youngest and his speech is coming along great.  

 

Its just when you see changes in them that you worry.  My oldest is now saying he has pressure in his left ear and gets a headache.  His hearing has also dropped since the last visit.  We were lucky as it has not dropped in several years.  

I am so glad I found this website and I am from Braintree, Ma.  

 

Thank you all for listening to me ramble on and look forward to talking with you all.  

 

 
New Post 1/10/2014 9:35 AM
  Cristy1581
2 posts
No Ranking


Re: Where in the world is BOR Syndrome? 

 I am a 32 year women from the Bay Area, California

 

 
New Post 1/17/2014 9:48 PM
  pirovale
1 posts
No Ranking


Re: Where in the world is BOR Syndrome? 

hi, I am from Italy, I'm affected by BOR syndrome and my son is affected, he will be born in May and we will know its severity.

I'm just deaf and have bilateral cochlear implant bearer for now my kidneys are healthy and small around the year I was operated on branchial fistula. Bye Valentina from Milan

bye

valentina from Milan

 
New Post 5/29/2017 10:00 AM
  Mamamar
6 posts
No Ranking


Re: Where in the world is BOR Syndrome? 

 California. There are 2 (maybe 3) people in my family that we know of.

 
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