Guest guest Posted April 28, 1999 Report Share Posted April 28, 1999 Holly, Yes! Katelyn was able to have a cochlear implant. The cochlea was used, not the semicircular cannel. I would like to share some of this story with those who might be interested. It is necessary to have a detailed CT scan completed of the middle and inner ear before an implant can occur. It was discovered that both of her ears there were malformations of every part (ie middle ear bones, oval window, round window) except the cochlea in both ears were normal!!! It was also questioned if the nerve for hearing was formed, because of the inablilty to find facial nerve it was questionable if any nerve had been formed for hearing. After much talk with dr and audiologist they allowed Katelyn the chance to be implanted. She was the 11th child that was implanted at the Mayo Clinic in Rochester MN. She was their first child that had other problems besides deafness. Needless to say she is success story. She hears. I can honestly say that it was one of the most thrilling days in my life-The day the external unit was placed and she could hear!!!! We knew that she could hear because she was so afraid, she hugged her teacher and cried. There was not a dry eye in the place. Thanks for listening to a happy moment. Katelyn(8), Jenna(3), Shayna(1) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 1999 Report Share Posted May 1, 1999 theresa m My Ent is trying to tell us that he ia not a candidate for the implant. We have an appointment with doctor May 10th to talk and we will tell him about Katelyn. Thank you for responding and brightening our hopes. Holly alex CHaRGE. teresa stevermer wrote: > > > Holly, > Yes! Katelyn was able to have a cochlear implant. The cochlea was used, > not the semicircular cannel. > I would like to share some of this story with those who might be > interested. It is necessary to have a detailed CT scan completed of the > middle and inner ear before an implant can occur. It was discovered that > both of her ears there were malformations of every part (ie middle ear > bones, oval window, round window) except the cochlea in both ears were > normal!!! It was also questioned if the nerve for hearing was formed, > because of the inablilty to find facial nerve it was questionable if any > nerve had been formed for hearing. After much talk with dr and audiologist > they allowed Katelyn the chance to be implanted. She was the 11th child > that was implanted at the Mayo Clinic in Rochester MN. She was their first > child that had other problems besides deafness. Needless to say she is > success story. She hears. I can honestly say that it was one of the most > thrilling days in my life-The day the external unit was placed and she > could hear!!!! We knew that she could hear because she was so afraid, she > hugged her teacher and cried. There was not a dry eye in the place. > Thanks for listening to a happy moment. > > Katelyn(8), Jenna(3), Shayna(1) > > ------------------------------------------------------------------------ > Show mom you love her. Check out our great Mother's Day Gifts! > 14K Gold and gemstone jewelry, leather and cloth wallets and purses, > gardening, gourmet, kitchen, more! Free Shipping in the US! > http://www.onelist.com/ad/shoptheglobe5 > ------------------------------------------------------------------------ > 4th International CHARGE Syndrome Conference, Houston, Texas, July > 23-25, 1999. > For information about the CHARGE Syndrome Foundation or to become a member please contact marion@.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 1999 Report Share Posted May 22, 1999 . I am responding to your cochlear implant story a little late! Life has been really crazy with us the last couple months and I haven't been able to read all my mail. One of the things we've been busy with is, , our almost 4 CHARgEr, they are now telling us she is deaf , after another ABR and BAER, behavorial tests show there is something when we went to a school for the deaf to be tested. Anyway, after the BAER and ABR came back with " no reproducebale results at any level " we inquired about cochlear implants and were told they do not give them to children that are neurologically impaired. What is your and anyone elses opinion on this? I'm very happy for you is your charger neuro impaired? You said they were other problems. Anixous to hear what anyone has to say on this, Cathie & Jeff parents of CHARgE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 1999 Report Share Posted May 22, 1999 Cathie wrote: , our almost 4 CHARgEr, they are now telling us she is deaf , after another ABR and BAER, behavorial tests show there is something when we went to a school for the deaf to be tested. Anyway, after the BAER and ABR came back with " no reproducebale results at any level " we inquired about cochlear implants and were told they do not give them to children that are neurologically impaired. What is your and anyone elses opinion on this? I'm very happy for you is your charger neuro impaired? Hi Cathie! What do they/you mean by neurologically impaired? Mentally retarded OR neurologic hearing loss? If they mean mentally retarded I do not understand how they can give your child with severe multisensory impairment this label!!! Cheryl, , (5), (3, CHaRGE) MI Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 1999 Report Share Posted May 23, 1999 NPTQueenie@... wrote: > > From: NPTQueenie@... > > . > I am responding to your cochlear implant story a little late! Life has been > really crazy with us the last couple months and I haven't been able to read > all my mail. One of the things we've been busy with is, , our almost 4 > CHARgEr, they are now telling us she is deaf , after another ABR and BAER, > behavorial tests show there is something when we went to a school for the > deaf to be tested. Anyway, after the BAER and ABR came back with " no > reproducebale results at any level " we inquired about cochlear implants and > were told they do not give them to children that are neurologically impaired. > What is your and anyone elses opinion on this? I'm very happy for you is > your charger neuro impaired? You said they were other problems. > > Anixous to hear what anyone has to say on this, > Cathie & Jeff parents of CHARgE > , Bull ----. The main thing about implanting a neurologically impaired kid is to make sure the motivation and enough cognitive " stuff " is there so that they can make use of the implant, after all it is hard work. I'd seek a 2nd opinion. Jeanie Colp mom to MacKenzie 11mos.3wks. CHARGE, to be implanted in Dec. Nova Scotia, Canada Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 1999 Report Share Posted May 24, 1999 >From: NPTQueenie@... > >. >I am responding to your cochlear implant story a little late! Life has been >really crazy with us the last couple months and I haven't been able to read >all my mail. One of the things we've been busy with is, , our almost 4 >CHARgEr, they are now telling us she is deaf , after another ABR and BAER, >behavorial tests show there is something when we went to a school for the >deaf to be tested. Anyway, after the BAER and ABR came back with " no >reproducebale results at any level " we inquired about cochlear implants and >were told they do not give them to children that are neurologically impaired. > What is your and anyone elses opinion on this? I'm very happy for you is >your charger neuro impaired? You said they were other problems. > >Anixous to hear what anyone has to say on this, >Cathie & Jeff parents of CHARgE > Cathie and Jeff, In respond to your question about neuro impairments. Katelyn's has neuro impairment. She does not have 7th cranial nerve function. If you want your child to have a cochlear implant find a surgeon and audiologist that is willing to work with you. I have another story. yesturday I told Katelyn to take off her shoes. She was around the corner. She could not see me. When I looked around the corner she was taking her shoes off. It is fun to see it work. Katelyn (8) >------------------------------------------------------------------------ >Give back to your community through " Grow to Give. " >http://www.ONElist.com >See homepage for details. >------------------------------------------------------------------------ >4th International CHARGE Syndrome Conference, Houston, Texas, July >23-25, 1999. >For information about the CHARGE Syndrome Foundation or to become a member >please contact marion@.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 1999 Report Share Posted May 25, 1999 Hi Cheryl, Thanks for the reply. The Drs. more or less said that they do not give cochlear implants to children with developmental delays, they never used the words mental retardation, they used there words carefully but alluded to the fact that she has so many problems that she simply would not be candidate. is developmentally delayed, she has lots or reasons to be! She is deaf, legally blind and has had 24 operations in less than her 4 years of life. We know CHARGE children are not mentally retardated, I'm not sure others know the difference. She has come a LONG way and is doing more every day. If she could hear it would be a big help. I wish others would take these things into consideration. See how well they would learn with these dissabilities. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 1999 Report Share Posted May 25, 1999 Jennie, thanx, I am going for aother opinion. What is Mckenzies hearing status? Cathie, Jeff and CHARgE 4 Quote Link to comment Share on other sites More sharing options...
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