Guest guest Posted October 14, 2005 Report Share Posted October 14, 2005 Hello, I have a 1 year old son just recently diagnosed with charge syndrome. We are from WV and moved to Tower City, PA for better care for our son. He is deaf and we are hoping that he will be able to get the cochlear implant. I was wondering if anybody has seen the implant team at childrens hospital in Pittsburg? And if anyone has gotten turned down for the implant? He is deaf in both ears,due to Mondini deformity. Thanks, Chamberlain Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2005 Report Share Posted October 14, 2005 Hi , We are not from Pittsburg but our daughter is also deaf due to mondini. Cassidy received a cochlear implant about 18 months ago. We had to go through a process to determine if she was a candidate which included a CT scan and an MRI. Through those tests they determine first of all if there is enough of the cochlea to work with, and secondly if the hearing nerve is there. One of our daughter's ears was better than the other as far as how many turns with her cochlea, which determined which side they implanted. She has profound hearing loss and can not hear anything without the implant. Hearing aids did very little for her. Now that she has been implanted for 18 months what I would tell you is that she has had to be mapped more frequently. Meaning they have to adjust the volumes and sensitivity of the implant more. She requires more " power " due to the mondini. We don't mind going to our audiologist more frequently because she is now hearing so many things. That was mostly the first 15 months or so. We seem to have found a really good setting for her, finally. She is now beginning to say a few intelligible words, and is vocalizing a ton. Also, she is understanding simple phrases, her colors, directions...things like that. I hope this helps a little. Good luck with the process. Let me know if you have any questions. Renae mom to Cassidy almost 4, and Hailey (normal health) cochlear implant Hello, I have a 1 year old son just recently diagnosed with charge syndrome. We are from WV and moved to Tower City, PA for better care for our son. He is deaf and we are hoping that he will be able to get the cochlear implant. I was wondering if anybody has seen the implant team at childrens hospital in Pittsburg? And if anyone has gotten turned down for the implant? He is deaf in both ears,due to Mondini deformity. Thanks, Chamberlain Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter), please contact marion@... or visit the web site at HYPERLINK " http://www.chargesyndrome.org " http://www.chargesyndrome.org - for CHARGE Syndrome Canada information and membership, please visit HYPERLINK " http://www.chargesyndrome.ca " http://www.chargesyndrome.ca or email info@... . 8th International CHARGE Syndrome Conference, July, 2007. Information will be available at www.chargesyndrome.org or by calling 1-. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2005 Report Share Posted October 14, 2005 welcome is it a sensory loss or the bone one course ive got a bone caanal loss got bahah aide works great for me ellen > > Hi , > > We are not from Pittsburg but our daughter is also deaf due to mondini. > Cassidy received a cochlear implant about 18 months ago. We had to go > through a process to determine if she was a candidate which included a > CT scan and an MRI. Through those tests they determine first of all if > there is enough of the cochlea to work with, and secondly if the hearing > nerve is there. One of our daughter's ears was better than the other as > far as how many turns with her cochlea, which determined which side they > implanted. She has profound hearing loss and can not hear anything > without the implant. Hearing aids did very little for her. > > Now that she has been implanted for 18 months what I would tell you is > that she has had to be mapped more frequently. Meaning they have to > adjust the volumes and sensitivity of the implant more. She requires > more " power " due to the mondini. We don't mind going to our audiologist > more frequently because she is now hearing so many things. That was > mostly the first 15 months or so. We seem to have found a really good > setting for her, finally. She is now beginning to say a few > intelligible words, and is vocalizing a ton. Also, she is understanding > simple phrases, her colors, directions...things like that. > > I hope this helps a little. Good luck with the process. Let me know if > you have any questions. > > Renae > mom to Cassidy almost 4, and Hailey (normal health) > > cochlear implant > > > Hello, > > I have a 1 year old son just recently diagnosed with charge syndrome. > We are from WV and moved to Tower City, PA for better care for our > son. He is deaf and we are hoping that he will be able to get the > cochlear implant. I was wondering if anybody has seen the implant > team at childrens hospital in Pittsburg? And if anyone has gotten > turned down for the implant? He is deaf in both ears,due to Mondini > deformity. > > Thanks, > Chamberlain > > > > > > Membership of this email support groups does not constitute membership > in the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at HYPERLINK > " http://www.chargesyndrome.org " http://www.chargesyndrome.org - for > CHARGE Syndrome Canada information and membership, please visit > HYPERLINK " http://www.chargesyndrome.ca " http://www.chargesyndrome.ca or > email info@... . > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org <http://www.chargesyndrome.org> or by calling > 1-. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2005 Report Share Posted November 2, 2005 - I'm sorry you ran into obstacles but I am wishing your perserverance and determination in getting that second opinion! I read an article or something about Botox for secretions. Very interesting! I hope it is successful for Jonas! Michele Westmaas mom to Aubrie 7 yrs CHaRgE and 13 yrs, wife to DJ Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.