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Going completely deaf?????

Posted by on Oct. 1, 2010 at 12:18 PM
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My son has severe bilateral hearing loss.   Lately he is turning up the tv to ridiculously high volumes, 60+, with his h.a. on.  He said he hears the same.  I am thinking he is used to really amplified sound because of the fm system at school.  I am worried he is losing more of his hearing.

Has any of your children gone from hearing loss to deafness? How did the children handle it? and Did they get cochlear implants and at what age????

by on Oct. 1, 2010 at 12:18 PM
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Replies (1-8):
Signingcat
by Member on Oct. 2, 2010 at 9:47 AM

I would take him in for a hearing test before you start to worry yourself. Have his hearing aids checked out to be sure they are working correctly. Some people can have a progressive loss, but it is hard to know. To ease your fears, take him in and get things checked out.

nonni2
by Member on Oct. 18, 2010 at 6:38 PM

THANK YOU, he has an appt coming up in november, there is always a 3 month out scheduling.  we need more audiologists in this area.

gigi-rn
by Member on Oct. 19, 2010 at 9:30 AM

My daughter is now 4 and that is how we found out that she had loss more hearing.  She kept asking for the tv to be turned up. But maybe he has fluid behind the ears....especially this time of year.  My daughter started with a mild hearing loss and is now at a severe.  They say it depends on what caused the hearing loss....ours is from connexin 26 but we have a rare one that they do not know if she will lose all the hearing or not:(  Sometimes you just have to wait and see. Just to be safe we have used total communication so that if she does go completely deaf she will be able to transition a little better. Good luck and I hope you get everything straightened out:)

gigi-rn
by Member on Oct. 19, 2010 at 9:31 AM

also try to call the audiologist directly explain your concerns...sometimes they get cancellations and if she knows you are looking she can just give you a call

silliesthilly
by New Member on Oct. 20, 2010 at 8:39 AM

Ditto fluid.  My son had a mild loss that last winter was testing at moderate loss due to fluid build-up.  As soon as the fluid cleared, he's back at a mild loss.  so if your son had a more sever loss to begin with... yeah, fluid could compound to the profound range potentially.  Are the HAs working well?  With new batteries?  I'd check that too.

I personally have progressive hearing loss but no experience observing it in others,

nonni2
by Member on Nov. 8, 2010 at 8:53 PM

just an update.  his hearing has not changed. thank God. we are ordering newer, better hearing aids.  audiologist said older hearing aids sometimes do funny things. all electronics i guess.    

nonni2
by Member on Nov. 8, 2010 at 8:55 PM

we are waiting for our genetic testing appointment, as well as an EKG test for my daughter. 

Has anyone had cochlea studies done???  Has it really helped?

Quoting gigi-rn:

My daughter is now 4 and that is how we found out that she had loss more hearing.  She kept asking for the tv to be turned up. But maybe he has fluid behind the ears....especially this time of year.  My daughter started with a mild hearing loss and is now at a severe.  They say it depends on what caused the hearing loss....ours is from connexin 26 but we have a rare one that they do not know if she will lose all the hearing or not:(  Sometimes you just have to wait and see. Just to be safe we have used total communication so that if she does go completely deaf she will be able to transition a little better. Good luck and I hope you get everything straightened out:)


MommyofaCIkid
by New Member on Nov. 9, 2010 at 3:23 PM
My. Son also has connexiun 26 which is what caused his hearing loss. We were lucky to catch it at 8mths. At that time he had severe to profound bilateral hearing loss. He was fitted with hearing aids, however they did very little for him. We found out about the cause of his hearing loss shortly after by having genetic testing done. He received his first cochlear implant at 18mths his second at 20mths. He is doing amazing now.
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