Guest guest Posted September 18, 2000 Report Share Posted September 18, 2000 hi all, i joined this list to pick up info. on my sons recent dx. of hearing loss, but thanks to recent posts i have gone beyond that. when we went for genetic consult last year for daniel, they asked for family info. i mentioned that my now 23 yr. old had been born with a pre- auricular sinus,( which she had three surgeries on ) to which the drs. response was , did she have any kidney problems ?? i thought that this was so far out in left field that he had not heard me correctly, but my reply was , yes, she had kidney reflux, and surgery to re implant the ureters. anyway he said she may have " branchio oto renal syndrome " . i have since been searching for info. on the same, to no avail, ( i have a basic info. sheet via the net , that tells of doom and gloom, and a 50% chance that each of her children could have it to a lesser or greater extent. ) we have an appt. with an adult genetic dr. which we hope will be scheduled, ??soon. ( the wait list is 7 to 8 mths. ) so if anyone has any info. site, or knowledge on how testing is done ,( is klippel feil, the same syndrome?) i would be SO thrilled, so that when we do eventually get the appt. ill know what im talking about. thank you very much indeed. jillian, daniels ( & jaimes ) mom. _________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com. Share information about yourself, create your own public profile at http://profiles.msn.com. Quote Link to comment Share on other sites More sharing options...
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