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Posted by nicole m on 2/11/2006, 9:42 pm, in reply to "9 year old w/ VCFS w/ hearing loss"
Link: http://www.vcfsef.org
216.97.188.48
I think you might benefit from these websites. www.vcfsef.org and www.maxappeal.org.uk These sites have alot of info and I have heard of something called "gum ear" I think. Check these sites out an i wish you all the luck in the world. Also if you are interested you can join a group, vcfs family support group at yahoo groups. There is alot of information shared there too. God bless you. Nicole
--Previous Message--
: My 9 year old son was diagnosed 2
: years ago with VCFS at that time he
: had a string of test, including his
: kidneys, heart, hearing, eyes...and
: so on. These test only showed a
: small abnormality with his heart,
: and his right eye, that are being
: carfully monitored. However at his
: yearly check up with the
: pediatrician they found he now has
: signifigant hearing loss in his
: right ear. So much so that he can
: no longer hear from that ear. He did
: not have an accedent and they have
: ruled out fluid behind his ear drum.
: They did say however that his ear
: drums are a different colour from
: what they have seen before. His left
: ear at this time seems to be okay.
: He is scheduled for another CT scan
: on tuesday, for both ears. The ENT
: Doctor is concerned that he could
: also lose the hearing in his left
: ear. With everything else he has to
: deal with on a daily basis, it sends
: chills down my spine to think he may
: be going deaf. Has anyone else had
: any similar experiences with this?
: If so what was the outcome? Or does
: anyone know if this is common in
: children with VCFS. It seems strang
: to me that a child can lose there
: hearing in such a short period of
: time? Please, any input would be so
: much help.
:
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