Guest guest Posted February 2, 2006 Report Share Posted February 2, 2006 I want to suggest that you keep an eye on ear infecctions and strong antibiotics. Those can both cause deterioration in hearing. I have hearing loss caused by both. For now dont aid the good ear i guess but maby have earplugs for when she gets her head/hair wet. Just to minimize ear infections. I think with some ear defects chargers may be prone to infections even if they dont have a lot of initial hearing loss. Dunno. Chantelle > > Hi, > I'm writing to ask a hearing question. Some may remember me, my daughter Raegan is now 8 months,she just had Open Heart Surgery in December. I tend to lurk and don't get much time to read everything. Raegan just had her third ABR and the results indicate that her right ear has moderate to severe loss and her left ear has normal hearing. In past test the left ear looked like it was mild, now normal. I received a call today from the audiologist and she went over the results with me. She informed me that she reviewed the results with her colleagues and they feel that at this time Raegan does not need hearing aids. I am very confused because the point of this third ABR was to pinpoint a degree of loss in both ears and get aids, she was fitted for them during the test on Monday. I have spoken with my hearing therapist and she is having my Early Intervention Audiologist contact me, she did not know what to do in regards to aids as well. She did say that it could be harmful to aid the > ear that is normal. Hearing loss and amplification are all new to me, I was a special education teacher, but never had any hard of hearing students. I am just wondering if anyone has had similar ABR results and what you have done regarding hearing aids. > > Thanks, > Judy > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2006 Report Share Posted February 2, 2006 Eva has a complete loss in her left ear and a seveare loss in the right so we only aid the right. I dont know why they would aid an ear that is good. Maybe down the road if it gets worse maybe but if she can hear out of it then its a good thing. MAybe aid the one that has somewhat of a loss. I think your daughter will be fine and wont really need sign if she has good hearing. Good luck and I hope you get it all figured out. Crystal and Eva (9 month charger) > > Hi, > I'm writing to ask a hearing question. Some may remember me, my daughter Raegan is now 8 months,she just had Open Heart Surgery in December. I tend to lurk and don't get much time to read everything. Raegan just had her third ABR and the results indicate that her right ear has moderate to severe loss and her left ear has normal hearing. In past test the left ear looked like it was mild, now normal. I received a call today from the audiologist and she went over the results with me. She informed me that she reviewed the results with her colleagues and they feel that at this time Raegan does not need hearing aids. I am very confused because the point of this third ABR was to pinpoint a degree of loss in both ears and get aids, she was fitted for them during the test on Monday. I have spoken with my hearing therapist and she is having my Early Intervention Audiologist contact me, she did not know what to do in regards to aids as well. She did say that it could be harmful to aid the > ear that is normal. Hearing loss and amplification are all new to me, I was a special education teacher, but never had any hard of hearing students. I am just wondering if anyone has had similar ABR results and what you have done regarding hearing aids. > > Thanks, > Judy > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2006 Report Share Posted February 2, 2006 Judy, What is Raegan's vision like? Has she had a CT or MRI of the temporal lobe that checks for malformations of the cochlea and vestibular system? Does she speak or sign? Does she seem to hear? I ask because the overall consensus with CHARGE is to aid as quickly as possible. Oftentimes aides are delayed until we " know " the specific degree of loss. The problem is with the multiple sensory impairments in CHARGE, and a tendency for language development to be delayed, sometimes it can take a very long time to know for sure. Also with kids who have normal vision, normal balance, and normal hearing in one ear then maybe they have enough info coming in to make due and have " fairly typical " learning and development. With CHARGE the impact of having hearing in only one ear cannot be underestimated when considered in conjunction with the other losses. I would recommend the audiologists talk with Jim Thelin from TN - he knows CHARGE. He was very helpful with out audiologists and letting them know some ways to proceed with testing in a child with CHARGE. Kim L > Hi, > I'm writing to ask a hearing question. Some may remember me, my daughter > Raegan is now 8 months,she just had Open Heart Surgery in December. I tend to > lurk and don't get much time to read everything. Raegan just had her third ABR > and the results indicate that her right ear has moderate to severe loss and > her left ear has normal hearing. In past test the left ear looked like it was > mild, now normal. I received a call today from the audiologist and she went > over the results with me. She informed me that she reviewed the results with > her colleagues and they feel that at this time Raegan does not need hearing > aids. I am very confused because the point of this third ABR was to pinpoint a > degree of loss in both ears and get aids, she was fitted for them during the > test on Monday. I have spoken with my hearing therapist and she is having my > Early Intervention Audiologist contact me, she did not know what to do in > regards to aids as well. She did say that it could be harmful to aid the > ear that is normal. Hearing loss and amplification are all new to me, I was a > special education teacher, but never had any hard of hearing students. I am > just wondering if anyone has had similar ABR results and what you have done > regarding hearing aids. > > Thanks, > Judy > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2006 Report Share Posted February 2, 2006 Judy- I agree with Kim. My daughter is now 8 years old and didn't get aided til age 3 yrs. She has one " good " ear and one " bad " ear. The good one seemed good enough not to aid it. And I guess good enough that they felt she was getting enough info from it to not be concerned about the loss in the bad ear. Now we know that she benefits from aids in both ears -- even the good one. We know by her responses in the testing booth and in real life. Her " good " ear might be good enough for a person with no other issues to manage well with, but combined with all the other CHARGE stuff, it needs support. My gut says to at least aid the worse ear until you have better info on the good one. Raegan will let you know if it helps or not by his response to it -- hopefully. Now, getting them to wear them at first can be a challenge. We can all give you ideas on that when you are ready. Jim Thelin is surely the guy to talk to. Michele W Mom to Aubrie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2006 Report Share Posted February 2, 2006 Judy, Wearing hearing aids doesn't mean you HAVE to wear one on each ear. You can aid one and have the other " normal " ear unaided. When you talk with people remember that you want your daughter to have the optimal hearing experiences from the start. You don't want to play " catch up. " You also want to get her used to the feeling of having it in her ear early, if you fell you are going go be going down that road. Remember that she needs to hear her best not only for communication but for her being aware, learning and understanding her entire environment. Maybe it is because she's a baby that they are questioning things. Because she has CHARGE there is so much more getting in the way with her experiencing the world that it is even more important for her to hear her best. Remember though that we are parents here so our advice may not meet what your daughter really needs. Because of that I so agree with Kim and Michele, call or write to Jim Thelin. He can advise you with what to do specifically for Raegan. Good luck. Bonnie, mom to a 23, Patty CHARGE 21, and wife to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2006 Report Share Posted February 3, 2006 Bonnie, This is exactly what I've been thinking, why not aid the moderate to severe ear and why wait any longer. I have been in touch via e-mail with Jim Thelin thanks to Meg and I will be speaking with him this morning on the phone. I did not receive any e-mails from Michele or Kim, maybe I'm expereicing problems with Yahoo as well. Thanks for your advise. Judy Turk22082@... wrote: Judy, Wearing hearing aids doesn't mean you HAVE to wear one on each ear. You can aid one and have the other " normal " ear unaided. When you talk with people remember that you want your daughter to have the optimal hearing experiences from the start. You don't want to play " catch up. " You also want to get her used to the feeling of having it in her ear early, if you fell you are going go be going down that road. Remember that she needs to hear her best not only for communication but for her being aware, learning and understanding her entire environment. Maybe it is because she's a baby that they are questioning things. Because she has CHARGE there is so much more getting in the way with her experiencing the world that it is even more important for her to hear her best. Remember though that we are parents here so our advice may not meet what your daughter really needs. Because of that I so agree with Kim and Michele, call or write to Jim Thelin. He can advise you with what to do specifically for Raegan. Good luck. Bonnie, mom to a 23, Patty CHARGE 21, and wife to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2006 Report Share Posted February 3, 2006 If you get this email look under the archives under your topic of hearing question - you will find our replies there. Mainly we talk about enhancing whatever hearing is available as early as possible and contacting Jim Thelin. Kim > Bonnie, > This is exactly what I've been thinking, why not aid the moderate to severe > ear and why wait any longer. I have been in touch via e-mail with Jim Thelin > thanks to Meg and I will be speaking with him this morning on the phone. I did > not receive any e-mails from Michele or Kim, maybe I'm expereicing problems > with Yahoo as well. Thanks for your advise. > Judy > > Turk22082@... wrote: > Judy, > > Wearing hearing aids doesn't mean you HAVE to wear one on each ear. You can > aid one and have the other " normal " ear unaided. > > When you talk with people remember that you want your daughter to have the > optimal hearing experiences from the start. You don't want to play " catch > up. " > You also want to get her used to the feeling of having it in her ear early, > if you fell you are going go be going down that road. Remember that she needs > to hear her best not only for communication but for her being aware, learning > and understanding her entire environment. Maybe it is because she's a baby > that they are questioning things. Because she has CHARGE there is so much > more > getting in the way with her experiencing the world that it is even more > important for her to hear her best. > > Remember though that we are parents here so our advice may not meet what your > daughter really needs. Because of that I so agree with Kim and Michele, call > or write to Jim Thelin. He can advise you with what to do specifically for > Raegan. > > Good luck. > > > > > Bonnie, mom to a 23, Patty CHARGE 21, and wife to > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2006 Report Share Posted February 4, 2006 Judith, I would err on the side of caution but get that right ear aided as soon as possible and continue the testing on a regular basis for both ears to ensure nothing is missed that may come up in the future with the left ear. The earier the better to get the aids on. Kennedy had her first aids at 9 months (just about the same as Reagan's age!) Sorry to be so late responding, it is SAT morning and I'm just now getting WEDS messages from last week. Gotta love yahoo... Weir Home: lisaweir@... Work: lisa.weir@... Phone: Web: http://ca.geocities.com/weirfamilyrogers Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2006 Report Share Posted February 4, 2006 Kim, I was in touch yesterday with Jim, we spoke on the phone and he was extremely helpful, very informative. As to answer your questions: Raegan has normal vision for an 8 month old despite her retinal colobomas. I feel that while she was in the NICU she did have a CTor MRI, I need to contact her ENT and ask him many questions, we will also be seeing him in 2 weeks. Raegan does make consonant sounds (vowels sounds on occasion) and she uses her voice to gain attention, engage in conversation with others and while playing with her toys. I am so appreciative of every ones responses and input, the minute I heard from the audiologist not to proceed with hearing aids, my red flags went up again. Right now I have the information from Jim and my Early Intervention Audiologist is reviewing the ABR results along with Raegan's hearing therapist, we will all be speaking early next week in regards as to our next step. Thanks. Judy Kim Lauger wrote: Judy, What is Raegan's vision like? Has she had a CT or MRI of the temporal lobe that checks for malformations of the cochlea and vestibular system? Does she speak or sign? Does she seem to hear? I ask because the overall consensus with CHARGE is to aid as quickly as possible. Oftentimes aides are delayed until we " know " the specific degree of loss. The problem is with the multiple sensory impairments in CHARGE, and a tendency for language development to be delayed, sometimes it can take a very long time to know for sure. Also with kids who have normal vision, normal balance, and normal hearing in one ear then maybe they have enough info coming in to make due and have " fairly typical " learning and development. With CHARGE the impact of having hearing in only one ear cannot be underestimated when considered in conjunction with the other losses. I would recommend the audiologists talk with Jim Thelin from TN - he knows CHARGE. He was very helpful with out audiologists and letting them know some ways to proceed with testing in a child with CHARGE. Kim L > Hi, > I'm writing to ask a hearing question. Some may remember me, my daughter > Raegan is now 8 months,she just had Open Heart Surgery in December. I tend to > lurk and don't get much time to read everything. Raegan just had her third ABR > and the results indicate that her right ear has moderate to severe loss and > her left ear has normal hearing. In past test the left ear looked like it was > mild, now normal. I received a call today from the audiologist and she went > over the results with me. She informed me that she reviewed the results with > her colleagues and they feel that at this time Raegan does not need hearing > aids. I am very confused because the point of this third ABR was to pinpoint a > degree of loss in both ears and get aids, she was fitted for them during the > test on Monday. I have spoken with my hearing therapist and she is having my > Early Intervention Audiologist contact me, she did not know what to do in > regards to aids as well. She did say that it could be harmful to aid the > ear that is normal. Hearing loss and amplification are all new to me, I was a > special education teacher, but never had any hard of hearing students. I am > just wondering if anyone has had similar ABR results and what you have done > regarding hearing aids. > > Thanks, > Judy > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2006 Report Share Posted February 4, 2006 Michele, My exact thought when the audiologist suggested not to proceed with hearing aids was why not aid the bad ear. I definitely have a lot of homework to do in the area of hearing loss and hearing aids. But I agree with you and everyone else, the sooner the better. Thanks for your advise and support. Judy Michele Westmaas wrote: Judy- I agree with Kim. My daughter is now 8 years old and didn't get aided til age 3 yrs. She has one " good " ear and one " bad " ear. The good one seemed good enough not to aid it. And I guess good enough that they felt she was getting enough info from it to not be concerned about the loss in the bad ear. Now we know that she benefits from aids in both ears -- even the good one. We know by her responses in the testing booth and in real life. Her " good " ear might be good enough for a person with no other issues to manage well with, but combined with all the other CHARGE stuff, it needs support. My gut says to at least aid the worse ear until you have better info on the good one. Raegan will let you know if it helps or not by his response to it -- hopefully. Now, getting them to wear them at first can be a challenge. We can all give you ideas on that when you are ready. Jim Thelin is surely the guy to talk to. Michele W Mom to Aubrie 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 http://www.chargesyndrome.org - for CHARGE Syndrome Canada information and membership, please visit 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 February 4, 2006 Report Share Posted February 4, 2006 Judy, I am so glad you spoke with Jim and proud of you for paying attention to your red flags! We may not have the years of knowledge in a field, but we are equipped with strong instincts on what is right for our children. Kim > Kim, > I was in touch yesterday with Jim, we spoke on the phone and he was > extremely helpful, very informative. As to answer your questions: Raegan has > normal vision for an 8 month old despite her retinal colobomas. I feel that > while she was in the NICU she did have a CTor MRI, I need to contact her ENT > and ask him many questions, we will also be seeing him in 2 weeks. Raegan does > make consonant sounds (vowels sounds on occasion) and she uses her voice to > gain attention, engage in conversation with others and while playing with her > toys. I am so appreciative of every ones responses and input, the minute I > heard from the audiologist not to proceed with hearing aids, my red flags went > up again. Right now I have the information from Jim and my Early Intervention > Audiologist is reviewing the ABR results along with Raegan's hearing > therapist, we will all be speaking early next week in regards as to our next > step. Thanks. > Judy > > Kim Lauger wrote: > Judy, > > What is Raegan's vision like? Has she had a CT or MRI of the temporal lobe > that checks for malformations of the cochlea and vestibular system? Does > she speak or sign? Does she seem to hear? > > I ask because the overall consensus with CHARGE is to aid as quickly as > possible. Oftentimes aides are delayed until we " know " the specific degree > of loss. The problem is with the multiple sensory impairments in CHARGE, > and a tendency for language development to be delayed, sometimes it can take > a very long time to know for sure. > > Also with kids who have normal vision, normal balance, and normal hearing in > one ear then maybe they have enough info coming in to make due and have > " fairly typical " learning and development. With CHARGE the impact of having > hearing in only one ear cannot be underestimated when considered in > conjunction with the other losses. > > I would recommend the audiologists talk with Jim Thelin from TN - he knows > CHARGE. He was very helpful with out audiologists and letting them know > some ways to proceed with testing in a child with CHARGE. > > Kim L > > > > >> Hi, >> I'm writing to ask a hearing question. Some may remember me, my daughter >> Raegan is now 8 months,she just had Open Heart Surgery in December. I tend >> to >> lurk and don't get much time to read everything. Raegan just had her third >> ABR >> and the results indicate that her right ear has moderate to severe loss and >> her left ear has normal hearing. In past test the left ear looked like it was >> mild, now normal. I received a call today from the audiologist and she went >> over the results with me. She informed me that she reviewed the results with >> her colleagues and they feel that at this time Raegan does not need hearing >> aids. I am very confused because the point of this third ABR was to pinpoint >> a >> degree of loss in both ears and get aids, she was fitted for them during the >> test on Monday. I have spoken with my hearing therapist and she is having my >> Early Intervention Audiologist contact me, she did not know what to do in >> regards to aids as well. She did say that it could be harmful to aid the >> ear that is normal. Hearing loss and amplification are all new to me, I was >> a >> special education teacher, but never had any hard of hearing students. I am >> just wondering if anyone has had similar ABR results and what you have done >> regarding hearing aids. >> >> Thanks, >> Judy >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2006 Report Share Posted February 4, 2006 , Yahoo is tricky (nicely put). Don't worry I just received messages from earlier in the week also. My reason for posting the question was just as you responded, aid the right ear. I have been in touch with Jim Thelin and my Early Intervention Audiologist, we are working on goals and a plan. I want to proceed with aids as soon as possible, why wait. Next week should be informative and hopefully we will know our next step with Raegan. Thanks for your input. Judy Weir wrote: Judith, I would err on the side of caution but get that right ear aided as soon as possible and continue the testing on a regular basis for both ears to ensure nothing is missed that may come up in the future with the left ear. The earier the better to get the aids on. Kennedy had her first aids at 9 months (just about the same as Reagan's age!) Sorry to be so late responding, it is SAT morning and I'm just now getting WEDS messages from last week. Gotta love yahoo... Weir Home: lisaweir@... Work: lisa.weir@... Phone: Web: http://ca.geocities.com/weirfamilyrogers Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2006 Report Share Posted February 6, 2006 Now that you have Jim's ear you'll figure things out. lol Bonnie, mom to a 23, Patty 21 (CHARGE) and wife to Quote Link to comment Share on other sites More sharing options...
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