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  The Cain Foundation Forum  Discussion Topi...  General  What are your 3 most significant BOR Syndrome Symptoms?
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New Post 6/29/2012 2:22 PM
  Harrison09
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What are your 3 most significant BOR Syndrome Symptoms? 

 My 9 year old Son has BOR Syndrome and his 3 major symptoms are smaller kidneys which only function a very small percentage of what they should do. This will result in a kidney transplant in later years.

He was born with the 2 earpits  on the outside of his ears and 2 neck fistulas.

He has a very mild hearing loss but does not need any aids at this stage.

I would like to hear what others have to add about their symptoms.

Regards

Fiona Cain

 
New Post 7/10/2012 11:59 AM
  lhart
3 posts
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Re: What are your 3 most significant BOR Syndrome Symptoms? 

My 18 month old son has BOR and his most significant symptoms are 1 lop ear, preauricular pits, branchal cleft cysts/fistulas, a blocked tear duct and small chin

My 8 week old daughter also has BOR. She has a cup ear, ear pits, neck fistulas and right facial paralysis. Also a blocked tear duct and small chin.

Thankfully both have passed their hearing screens so far and both have fully developed and functioning kidneys

 
New Post 7/21/2012 5:23 AM
  Beck4
4 posts
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Re: What are your 3 most significant BOR Syndrome Symptoms? 

My 2 year old son who has BOR has - Profound sensorineural hearing loss, he is a bilateral implant user, cup ears and ear pit, those are his 3 main symptoms of BOR, my daughter only has a inner ear pit and eye pit. Rebecca.

 
New Post 8/6/2012 4:23 PM
  Sarah Maguire
1 posts
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Re: What are your 3 most significant BOR Syndrome Symptoms? 

My 2.5 year old daughter had Branchio-oto-renal syndrome. She has preaucilar sinuses bilaterally, skin tags on her left ear and a branchial cyst (all removed last year) she also had mild/moderate hearing loss and wears aids in both ears. We are lucky that her kidneys are ok, we are also 3 months pregnant now and will just have to wait and see what happens next. It's nice to know we aren't alone! Sarah

 
New Post 11/20/2012 4:29 PM
  sparklybunny21
5 posts
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Re: What are your 3 most significant BOR Syndrome Symptoms? 
Modified By sparklybunny21  on 11/19/2012 11:31:04 PM)

Isa(1yr old) currently has mild to mod sensorineural hearing loss...but they did warn that her's is progressive so will most likely get worse with time. She is aided in both ears now.  She has Branchial cleft cysts on her neck that constantly leak goo crap, she had an ear pit on each ear but those were removed in Sept b/c they kept getting infected. and she's had issues with her eyes gooping up since birth and I thought it had gotten better but it's back to constant green junk in her eyes...so I'm guessing we've got the whole tear duct issue too...she's going to the Ped on Wed and I'll be pushing for testing to see if that is what it is. Her kidney's are fine(thank goodness.) they started out 2 deviations smaller than normal and then when they rechecked them over the summer the left one caught up and the right one is only 1 deviation smaller than normal. Phew...dodged a bullet with that one!

 
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