Guest guest Posted May 9, 2006 Report Share Posted May 9, 2006 To answer your questions: 1. she preferred it and tested better with it in the booth; recurrent ear infections with the in the ear aids. 2. aids worked but blocked her ears causing recurrent ear infections and a subsequent 50dB further hearing loss (they stopped completely when the aids came out of the ears) 3. Softband began at age 4 (can be used on babies though) - implant at age 8 4. No. we just thought of it at age 4 when the booth testing should better results with the bone aid. > > Can any of you that have the BAHA or have considered the BAHA for your > child tell me why you chose it or why you decided against it? Also, did aids > work and what was the hearing level with the aids vs. the BAHA? What age did > you start using the BAHA and how long did you use the softband before having > the surgery? Did any of the doctors or audiologists feel that it was not > needed early on, but might be an option when the child could have the > surgery? > > Thanks, > > Mom to 3yrs CHARGE > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2006 Report Share Posted May 9, 2006 To answer your questions: 1. she preferred it and tested better with it in the booth; recurrent ear infections with the in the ear aids. 2. aids worked but blocked her ears causing recurrent ear infections and a subsequent 50dB further hearing loss (they stopped completely when the aids came out of the ears) 3. Softband began at age 4 (can be used on babies though) - implant at age 8 4. No. we just thought of it at age 4 when the booth testing should better results with the bone aid. > > Can any of you that have the BAHA or have considered the BAHA for your > child tell me why you chose it or why you decided against it? Also, did aids > work and what was the hearing level with the aids vs. the BAHA? What age did > you start using the BAHA and how long did you use the softband before having > the surgery? Did any of the doctors or audiologists feel that it was not > needed early on, but might be an option when the child could have the > surgery? > > Thanks, > > Mom to 3yrs CHARGE > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2006 Report Share Posted May 9, 2006 To answer your questions: 1. she preferred it and tested better with it in the booth; recurrent ear infections with the in the ear aids. 2. aids worked but blocked her ears causing recurrent ear infections and a subsequent 50dB further hearing loss (they stopped completely when the aids came out of the ears) 3. Softband began at age 4 (can be used on babies though) - implant at age 8 4. No. we just thought of it at age 4 when the booth testing should better results with the bone aid. > > Can any of you that have the BAHA or have considered the BAHA for your > child tell me why you chose it or why you decided against it? Also, did aids > work and what was the hearing level with the aids vs. the BAHA? What age did > you start using the BAHA and how long did you use the softband before having > the surgery? Did any of the doctors or audiologists feel that it was not > needed early on, but might be an option when the child could have the > surgery? > > Thanks, > > Mom to 3yrs CHARGE > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2006 Report Share Posted May 9, 2006 what is a soft band our ENT or audiologist never mentioned BAHA or soft band. fortunately, my daughter did not have ear infections. Just one last month when she was 15 months old and she has been wearing hearing aids since she was 7 months old. But my guess she had fluid since last two or three months. now has tubes,. with hearing aids usage, is the probability more to get an ear infection. how often should she be checked for fluid in ears? Rita > > To answer your questions: > 1. she preferred it and tested better with it in the booth; recurrent ear > infections with the in the ear aids. > 2. aids worked but blocked her ears causing recurrent ear infections and a > subsequent 50dB further hearing loss (they stopped completely when the > aids > came out of the ears) > 3. Softband began at age 4 (can be used on babies though) - implant at > age > 8 > 4. No. we just thought of it at age 4 when the booth testing should > better > results with the bone aid. > > > > > > > > Can any of you that have the BAHA or have considered the BAHA for your > > child tell me why you chose it or why you decided against it? Also, did > aids > > work and what was the hearing level with the aids vs. the BAHA? What age > did > > you start using the BAHA and how long did you use the softband before > having > > the surgery? Did any of the doctors or audiologists feel that it was not > > needed early on, but might be an option when the child could have the > > surgery? > > > > Thanks, > > > > Mom to 3yrs CHARGE > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2006 Report Share Posted May 9, 2006 what is a soft band our ENT or audiologist never mentioned BAHA or soft band. fortunately, my daughter did not have ear infections. Just one last month when she was 15 months old and she has been wearing hearing aids since she was 7 months old. But my guess she had fluid since last two or three months. now has tubes,. with hearing aids usage, is the probability more to get an ear infection. how often should she be checked for fluid in ears? Rita > > To answer your questions: > 1. she preferred it and tested better with it in the booth; recurrent ear > infections with the in the ear aids. > 2. aids worked but blocked her ears causing recurrent ear infections and a > subsequent 50dB further hearing loss (they stopped completely when the > aids > came out of the ears) > 3. Softband began at age 4 (can be used on babies though) - implant at > age > 8 > 4. No. we just thought of it at age 4 when the booth testing should > better > results with the bone aid. > > > > > > > > Can any of you that have the BAHA or have considered the BAHA for your > > child tell me why you chose it or why you decided against it? Also, did > aids > > work and what was the hearing level with the aids vs. the BAHA? What age > did > > you start using the BAHA and how long did you use the softband before > having > > the surgery? Did any of the doctors or audiologists feel that it was not > > needed early on, but might be an option when the child could have the > > surgery? > > > > Thanks, > > > > Mom to 3yrs CHARGE > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2006 Report Share Posted May 9, 2006 what is a soft band our ENT or audiologist never mentioned BAHA or soft band. fortunately, my daughter did not have ear infections. Just one last month when she was 15 months old and she has been wearing hearing aids since she was 7 months old. But my guess she had fluid since last two or three months. now has tubes,. with hearing aids usage, is the probability more to get an ear infection. how often should she be checked for fluid in ears? Rita > > To answer your questions: > 1. she preferred it and tested better with it in the booth; recurrent ear > infections with the in the ear aids. > 2. aids worked but blocked her ears causing recurrent ear infections and a > subsequent 50dB further hearing loss (they stopped completely when the > aids > came out of the ears) > 3. Softband began at age 4 (can be used on babies though) - implant at > age > 8 > 4. No. we just thought of it at age 4 when the booth testing should > better > results with the bone aid. > > > > > > > > Can any of you that have the BAHA or have considered the BAHA for your > > child tell me why you chose it or why you decided against it? Also, did > aids > > work and what was the hearing level with the aids vs. the BAHA? What age > did > > you start using the BAHA and how long did you use the softband before > having > > the surgery? Did any of the doctors or audiologists feel that it was not > > needed early on, but might be an option when the child could have the > > surgery? > > > > Thanks, > > > > Mom to 3yrs CHARGE > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2006 Report Share Posted May 9, 2006 Ellen, interesting, my insurance paid thousands, and thousands for 's BAHA surgery, 3 separate surgeries, (they had to go back and do a skin graft) , then when we went to get the actual appliance (the hearing processor) we hooked it up to , they showed us how it worked, then as we were walking out the door they said " dont forget to stop in to the office manager " , so we did and she says that will be $3,400!. I almost fainted. She said we take credit cards. They never prepared us for this, we assumed it would have been covered by our insurance, since the surgery was. I fought, appealed, and no luck. This was at NYU, supposdely one of the top places in the country for implants. Now, we have a BAHA scew in her head (2), a $3400 processor and gets no benefit from it so it is not used! THey never tried the soft band. Her ENT siad b/c of her frequent ear infections, etc that mayeb this was the way to go, so referred us to the surgeon who just went with it. We thought this was our answer, and trusted they knew what they were doing, but obviously not. We are now going back to a digital hearing aide in one ear! Cathie, mom to erika 10yr Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2006 Report Share Posted May 9, 2006 foft band is the non implant i think its wat i have > > what is a soft band > our ENT or audiologist never mentioned BAHA or soft band. > fortunately, my daughter did not have ear infections. Just one last month > when she was 15 months old and she has been wearing hearing aids since she > was 7 months old. > But my guess she had fluid since last two or three months. > now has tubes,. > with hearing aids usage, is the probability more to get an ear infection. > how often should she be checked for fluid in ears? > > Rita > > > > > > > To answer your questions: > > 1. she preferred it and tested better with it in the booth; recurrent > ear > > infections with the in the ear aids. > > 2. aids worked but blocked her ears causing recurrent ear infections and > a > > subsequent 50dB further hearing loss (they stopped completely when the > > aids > > came out of the ears) > > 3. Softband began at age 4 (can be used on babies though) - implant at > > age > > 8 > > 4. No. we just thought of it at age 4 when the booth testing should > > better > > results with the bone aid. > > > > > > > > > > > > > > Can any of you that have the BAHA or have considered the BAHA for your > > > child tell me why you chose it or why you decided against it? Also, > did > > aids > > > work and what was the hearing level with the aids vs. the BAHA? What > age > > did > > > you start using the BAHA and how long did you use the softband before > > having > > > the surgery? Did any of the doctors or audiologists feel that it was > not > > > needed early on, but might be an option when the child could have the > > > surgery? > > > > > > Thanks, > > > > > > Mom to 3yrs CHARGE > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2006 Report Share Posted May 9, 2006 foft band is the non implant i think its wat i have > > what is a soft band > our ENT or audiologist never mentioned BAHA or soft band. > fortunately, my daughter did not have ear infections. Just one last month > when she was 15 months old and she has been wearing hearing aids since she > was 7 months old. > But my guess she had fluid since last two or three months. > now has tubes,. > with hearing aids usage, is the probability more to get an ear infection. > how often should she be checked for fluid in ears? > > Rita > > > > > > > To answer your questions: > > 1. she preferred it and tested better with it in the booth; recurrent > ear > > infections with the in the ear aids. > > 2. aids worked but blocked her ears causing recurrent ear infections and > a > > subsequent 50dB further hearing loss (they stopped completely when the > > aids > > came out of the ears) > > 3. Softband began at age 4 (can be used on babies though) - implant at > > age > > 8 > > 4. No. we just thought of it at age 4 when the booth testing should > > better > > results with the bone aid. > > > > > > > > > > > > > > Can any of you that have the BAHA or have considered the BAHA for your > > > child tell me why you chose it or why you decided against it? Also, > did > > aids > > > work and what was the hearing level with the aids vs. the BAHA? What > age > > did > > > you start using the BAHA and how long did you use the softband before > > having > > > the surgery? Did any of the doctors or audiologists feel that it was > not > > > needed early on, but might be an option when the child could have the > > > surgery? > > > > > > Thanks, > > > > > > Mom to 3yrs CHARGE > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2006 Report Share Posted May 9, 2006 foft band is the non implant i think its wat i have > > what is a soft band > our ENT or audiologist never mentioned BAHA or soft band. > fortunately, my daughter did not have ear infections. Just one last month > when she was 15 months old and she has been wearing hearing aids since she > was 7 months old. > But my guess she had fluid since last two or three months. > now has tubes,. > with hearing aids usage, is the probability more to get an ear infection. > how often should she be checked for fluid in ears? > > Rita > > > > > > > To answer your questions: > > 1. she preferred it and tested better with it in the booth; recurrent > ear > > infections with the in the ear aids. > > 2. aids worked but blocked her ears causing recurrent ear infections and > a > > subsequent 50dB further hearing loss (they stopped completely when the > > aids > > came out of the ears) > > 3. Softband began at age 4 (can be used on babies though) - implant at > > age > > 8 > > 4. No. we just thought of it at age 4 when the booth testing should > > better > > results with the bone aid. > > > > > > > > > > > > > > Can any of you that have the BAHA or have considered the BAHA for your > > > child tell me why you chose it or why you decided against it? Also, > did > > aids > > > work and what was the hearing level with the aids vs. the BAHA? What > age > > did > > > you start using the BAHA and how long did you use the softband before > > having > > > the surgery? Did any of the doctors or audiologists feel that it was > not > > > needed early on, but might be an option when the child could have the > > > surgery? > > > > > > Thanks, > > > > > > Mom to 3yrs CHARGE > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2006 Report Share Posted May 9, 2006 , is beginning this process...Our local ENT is not well versed in the BAHA and she has sent us to a new DR with her blessing... has analog aides...they are not working...after 2 years of trying every method to get digitals ( through insurance).I have thrown my hands up....I spoke with the case manager and her supervisor about this...I asked them since they would not help pay for the digitals were they prepared to payout for the surgery? They said of course they will pay for the surgery...Doesn't make sense to me..you would be willing to fork over 10 times the cost of what we were requesting plus but the hearing device. They said yes! That is the problem with our insurance companies... So we go forward.... had a dramatic result to the bone conduction test...His speech was unbelievably clear and 100% word recognition ...She even spoke quickly and did not miss a single word...It was truly amazing. is missing key components in class every day...the analog aides were ok in the beginning...He needed to be able to hear more...since he has diminished vision ( even though we have seen doctors that have said his vision is " cured " ) cannot rely on it to see what he is missing...He is going into 3rd grade. Some decisions needed to be made...We are still in the very beginning stages...The new doctor may say that he wants to wait who knows? But we are moving forward at least... Also 's cochlea is 2 1/4 turns which is almost normal and our ENT was not opposed to us looking in to a CI also. Again we are just starting our journey... Good luck Ellen mom to 8 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2006 Report Share Posted May 9, 2006 Good luck with the bahas. i gotta see my audiologist today about somethhing i need to sign for odsp to pay for my appointment last week. I need to keep pushing for the baha. Chantelle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2006 Report Share Posted May 9, 2006 Rita et al: Aubrie has mixed hearing loss and does really well in the booth with the conductive aid. However, she's been ruled out as a candidate for the BAHA by the leading guy in IL on this. She's doing really well with the latest technology in air conduction aids. Now -- here's the thing. She hasn't had ear tubes for a few years and has done well with very few infections. However, her hearing definitely fluctuates in relation to her ear and sinus health. Fluid can be a real problem even when there's no infection. It's been troubling me for some time. Now you all have me wondering if we need to revisit this with the ENT -- another set of tubes? Conductive aid? What would the answer be? We're seeing the ENT soon regarding the speech issue so I can add this to the growing list of concerns. Michele W mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2006 Report Share Posted May 9, 2006 Rita et al: Aubrie has mixed hearing loss and does really well in the booth with the conductive aid. However, she's been ruled out as a candidate for the BAHA by the leading guy in IL on this. She's doing really well with the latest technology in air conduction aids. Now -- here's the thing. She hasn't had ear tubes for a few years and has done well with very few infections. However, her hearing definitely fluctuates in relation to her ear and sinus health. Fluid can be a real problem even when there's no infection. It's been troubling me for some time. Now you all have me wondering if we need to revisit this with the ENT -- another set of tubes? Conductive aid? What would the answer be? We're seeing the ENT soon regarding the speech issue so I can add this to the growing list of concerns. Michele W mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2006 Report Share Posted May 9, 2006 Rita et al: Aubrie has mixed hearing loss and does really well in the booth with the conductive aid. However, she's been ruled out as a candidate for the BAHA by the leading guy in IL on this. She's doing really well with the latest technology in air conduction aids. Now -- here's the thing. She hasn't had ear tubes for a few years and has done well with very few infections. However, her hearing definitely fluctuates in relation to her ear and sinus health. Fluid can be a real problem even when there's no infection. It's been troubling me for some time. Now you all have me wondering if we need to revisit this with the ENT -- another set of tubes? Conductive aid? What would the answer be? We're seeing the ENT soon regarding the speech issue so I can add this to the growing list of concerns. Michele W mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2006 Report Share Posted May 9, 2006 Cathie, We have our insurance over a barrel...Here in Ct the bill was passed for the insurance to fund hearing aides ...aides being the operative word...CT insurance companies now say the law is not specific enough and they only need to fund analog aides...However it is semantics now because the BAHA is a hearing " device " . It requires surgery to implement... Not one that assists hearing ( aides do ) but a device that hears... so it must be funded. I am not 100% sure that I will do this ...'s teachers want to have a community fund raiser to fund digital aides so he does not want to go through yet another surgery. But we need to do something... Sorry about all the struggles....Your experience is very important to me...Thank you Ellen mom to 8 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2006 Report Share Posted May 9, 2006 Oh, Cathie- What a shock to have to pay out of pocket for the processor! And then it doesn't work for you??!! Argh!! If I ever had a wish related to CHARGE it would be that the answers would become more simple and straight forward. All this " we can't be sure " stuff is making me crazy. Just when you thought you'd found the answer -- the " aha BAHA! " moment -- and turns out it doesn't work. Michele W mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2006 Report Share Posted May 9, 2006 Michele, who is your ENT. You said, IL, which hospital do you go to. we see Dr. nancy young at children's memorial. and who is the BAHA guy in IL. can you please let me know the details. may be i have to talk to ENT again about number of turns on cochlea. we just know that our daughter has deficient apical turns. Thanks Rita > > Rita et al: > Aubrie has mixed hearing loss and does really well in the booth with the > conductive aid. However, she's been ruled out as a candidate for the BAHA > by the leading guy in IL on this. She's doing really well with the latest > technology in air conduction aids. Now -- here's the thing. She hasn't > had > ear tubes for a few years and has done well with very few infections. > However, her hearing definitely fluctuates in relation to her ear and > sinus > health. Fluid can be a real problem even when there's no infection. It's > been troubling me for some time. Now you all have me wondering if we need > to revisit this with the ENT -- another set of tubes? Conductive > aid? What > would the answer be? We're seeing the ENT soon regarding the speech issue > so I can add this to the growing list of concerns. > > Michele W > mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support group does not constitute membership in > the CHARGE Syndrome Foundation; 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 http://www.chargesyndrome.org > > 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 May 9, 2006 Report Share Posted May 9, 2006 Rita- We see Dr Randall Clary at St Louis Childrens and Dr. Novak at Carle Clinic in Urbana. Carle Clinic is the leader in BAHA & cochlear implants in IL from what I have learned from our DB specialists. We love their audiology dept! Are you in IL? Do you get services from Project Reach?? Michele W mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2006 Report Share Posted May 9, 2006 tests at 30-35 db with her aids and was just tested with the conductive aid and was at 15 db. Her ENT said that her aids are doing well and we should wait until she is older when she can have the surgery to consider the BAHA. She has not had an ear infection in a year and we have no problems with the aids other than she seems to get irritation from them once in a while. However, I feel like 15-20 db would be beneficial to her right now. I'm just very confused. Thanks for your input. --------------------------------- Yahoo! Mail goes everywhere you do. Get it on your phone. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2006 Report Share Posted May 9, 2006 tests at 30-35 db with her aids and was just tested with the conductive aid and was at 15 db. Her ENT said that her aids are doing well and we should wait until she is older when she can have the surgery to consider the BAHA. She has not had an ear infection in a year and we have no problems with the aids other than she seems to get irritation from them once in a while. However, I feel like 15-20 db would be beneficial to her right now. I'm just very confused. Thanks for your input. --------------------------------- Yahoo! Mail goes everywhere you do. Get it on your phone. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2006 Report Share Posted May 9, 2006 tests at 30-35 db with her aids and was just tested with the conductive aid and was at 15 db. Her ENT said that her aids are doing well and we should wait until she is older when she can have the surgery to consider the BAHA. She has not had an ear infection in a year and we have no problems with the aids other than she seems to get irritation from them once in a while. However, I feel like 15-20 db would be beneficial to her right now. I'm just very confused. Thanks for your input. --------------------------------- Yahoo! Mail goes everywhere you do. Get it on your phone. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2006 Report Share Posted May 9, 2006 Michele, Yes, I have often said if I ever had another CHARGEr, i would know so much more the next time around! When your child is born, you are so overwhelmed, their are so many medical concerns, you are at the mercy of your doctors. I know with some things, there wasn't time to research and others I didn't know where to begin.! Thanks to this list for all it support! Cathie, 's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2006 Report Share Posted May 9, 2006 Michele, Yes, I have often said if I ever had another CHARGEr, i would know so much more the next time around! When your child is born, you are so overwhelmed, their are so many medical concerns, you are at the mercy of your doctors. I know with some things, there wasn't time to research and others I didn't know where to begin.! Thanks to this list for all it support! Cathie, 's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2006 Report Share Posted May 9, 2006 Michele, Yes, I have often said if I ever had another CHARGEr, i would know so much more the next time around! When your child is born, you are so overwhelmed, their are so many medical concerns, you are at the mercy of your doctors. I know with some things, there wasn't time to research and others I didn't know where to begin.! Thanks to this list for all it support! Cathie, 's mom Quote Link to comment Share on other sites More sharing options...
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