Guest guest Posted November 12, 2004 Report Share Posted November 12, 2004 In a message dated 11/12/04 7:00:55 AM Eastern Standard Time, Listen-Up writes: > Should I rely on an ENT in my medium sized town to guide me in the > right direction for following Lexie's case? Should I take her to a > larger metropolitan area for treatment? Is the sedated ABR the next > logical step? I am feeling very skeptical now and not very trusting > after being misled for so long. I don't want to delay in getting > her the proper treatment any longer. I would appreciate advice from > other experienced parents. > > Also, do hearing aids make a big difference in kids with a partial > loss in one ear? Can I expect that she might improve with proper > treatment? I don't want to get my hopes up too much. > > Thank you for your time and input! > Teri > Welcome to the group. Both my daughter (just turned 2) and I have a severe/profound hearing loss in our left ear. I'll try to do my best to answer some of your questions. I would definitely do the sedated ABR. We did lots of booth tests with my daughter which gave us conflicting results. An audiologist from a reputable university hospital told us that Clara only had a moderate loss in her left ear, while the audi in our home town got it right that she felt her loss was more severe. We finally did a sedated ABR in September, which showed her loss to be severe/profound. I have read many people's messages on the list saying that ABR's can also be inconsistent, but in our case I'm very glad we had it done, as it seemed to confirm that she had the same type of loss as I do. I can surely understand your skepticism. It was disappointing to realize that hearing testing in babies/young children is not an exact science. While the ABRs are great, from what I understand, they can't give as accurate a picture of the type of hearing loss as a good test in the booth. But of course, booth testing relies on the cooperation of the child and the correct interpretation by the audi of the child's responses. It may be that you may have to go to a major city to get a sedated ABR. They didn't even do them in the town where I lived so I had no choice. Perhaps the early intervention people in your area know who's good? Just a thought. As for hearing aids helping, as I understand it, it depends on the loss. If Lexie has a severe/profound loss, then a hearing aid won't help much. They could turn it up loud enough that she would hear sounds, but it would be very distorted. If the loss is moderate, a hearing aid may help her. It's a bit controvertial whether to aid children with a unilateral loss. But her language is delayed so I would consider it. Many children (including myself) with a unilateral loss have no language delays. My daughter does have a language delay, but we believe that is due to fluid in her good ear. She has tubes now and her language has improved a lot. That may be something to look into as well. Children can have fluid in their ears without any sign of infection and it can be hard to detect. The main problem with a unilateral hearing loss is that it is difficult to hear in noisy situations and you can't tell where sounds are coming from. What you can do for Lexie is be on her right as much as you can, especially outside, in restaurants or in other noisy situations. When she starts school, you can look into FM systems or sound field systems. I was just put in front of the class and I did fine academically, but everyone is different. I try to make sure people I am talking to are on my right as much as I can. Here's an article on unilateral hearing loss in children: http://www.gohear.org/new/uniloss.html Good luck to you Cheryl (Clara's mom) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2004 Report Share Posted November 12, 2004 In a message dated 11/12/04 7:00:55 AM Eastern Standard Time, Listen-Up writes: > Should I rely on an ENT in my medium sized town to guide me in the > right direction for following Lexie's case? Should I take her to a > larger metropolitan area for treatment? Is the sedated ABR the next > logical step? I am feeling very skeptical now and not very trusting > after being misled for so long. I don't want to delay in getting > her the proper treatment any longer. I would appreciate advice from > other experienced parents. > > Also, do hearing aids make a big difference in kids with a partial > loss in one ear? Can I expect that she might improve with proper > treatment? I don't want to get my hopes up too much. > > Thank you for your time and input! > Teri > Welcome to the group. Both my daughter (just turned 2) and I have a severe/profound hearing loss in our left ear. I'll try to do my best to answer some of your questions. I would definitely do the sedated ABR. We did lots of booth tests with my daughter which gave us conflicting results. An audiologist from a reputable university hospital told us that Clara only had a moderate loss in her left ear, while the audi in our home town got it right that she felt her loss was more severe. We finally did a sedated ABR in September, which showed her loss to be severe/profound. I have read many people's messages on the list saying that ABR's can also be inconsistent, but in our case I'm very glad we had it done, as it seemed to confirm that she had the same type of loss as I do. I can surely understand your skepticism. It was disappointing to realize that hearing testing in babies/young children is not an exact science. While the ABRs are great, from what I understand, they can't give as accurate a picture of the type of hearing loss as a good test in the booth. But of course, booth testing relies on the cooperation of the child and the correct interpretation by the audi of the child's responses. It may be that you may have to go to a major city to get a sedated ABR. They didn't even do them in the town where I lived so I had no choice. Perhaps the early intervention people in your area know who's good? Just a thought. As for hearing aids helping, as I understand it, it depends on the loss. If Lexie has a severe/profound loss, then a hearing aid won't help much. They could turn it up loud enough that she would hear sounds, but it would be very distorted. If the loss is moderate, a hearing aid may help her. It's a bit controvertial whether to aid children with a unilateral loss. But her language is delayed so I would consider it. Many children (including myself) with a unilateral loss have no language delays. My daughter does have a language delay, but we believe that is due to fluid in her good ear. She has tubes now and her language has improved a lot. That may be something to look into as well. Children can have fluid in their ears without any sign of infection and it can be hard to detect. The main problem with a unilateral hearing loss is that it is difficult to hear in noisy situations and you can't tell where sounds are coming from. What you can do for Lexie is be on her right as much as you can, especially outside, in restaurants or in other noisy situations. When she starts school, you can look into FM systems or sound field systems. I was just put in front of the class and I did fine academically, but everyone is different. I try to make sure people I am talking to are on my right as much as I can. Here's an article on unilateral hearing loss in children: http://www.gohear.org/new/uniloss.html Good luck to you Cheryl (Clara's mom) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2004 Report Share Posted November 12, 2004 In a message dated 11/12/04 7:00:55 AM Eastern Standard Time, Listen-Up writes: > Should I rely on an ENT in my medium sized town to guide me in the > right direction for following Lexie's case? Should I take her to a > larger metropolitan area for treatment? Is the sedated ABR the next > logical step? I am feeling very skeptical now and not very trusting > after being misled for so long. I don't want to delay in getting > her the proper treatment any longer. I would appreciate advice from > other experienced parents. > > Also, do hearing aids make a big difference in kids with a partial > loss in one ear? Can I expect that she might improve with proper > treatment? I don't want to get my hopes up too much. > > Thank you for your time and input! > Teri > Welcome to the group. Both my daughter (just turned 2) and I have a severe/profound hearing loss in our left ear. I'll try to do my best to answer some of your questions. I would definitely do the sedated ABR. We did lots of booth tests with my daughter which gave us conflicting results. An audiologist from a reputable university hospital told us that Clara only had a moderate loss in her left ear, while the audi in our home town got it right that she felt her loss was more severe. We finally did a sedated ABR in September, which showed her loss to be severe/profound. I have read many people's messages on the list saying that ABR's can also be inconsistent, but in our case I'm very glad we had it done, as it seemed to confirm that she had the same type of loss as I do. I can surely understand your skepticism. It was disappointing to realize that hearing testing in babies/young children is not an exact science. While the ABRs are great, from what I understand, they can't give as accurate a picture of the type of hearing loss as a good test in the booth. But of course, booth testing relies on the cooperation of the child and the correct interpretation by the audi of the child's responses. It may be that you may have to go to a major city to get a sedated ABR. They didn't even do them in the town where I lived so I had no choice. Perhaps the early intervention people in your area know who's good? Just a thought. As for hearing aids helping, as I understand it, it depends on the loss. If Lexie has a severe/profound loss, then a hearing aid won't help much. They could turn it up loud enough that she would hear sounds, but it would be very distorted. If the loss is moderate, a hearing aid may help her. It's a bit controvertial whether to aid children with a unilateral loss. But her language is delayed so I would consider it. Many children (including myself) with a unilateral loss have no language delays. My daughter does have a language delay, but we believe that is due to fluid in her good ear. She has tubes now and her language has improved a lot. That may be something to look into as well. Children can have fluid in their ears without any sign of infection and it can be hard to detect. The main problem with a unilateral hearing loss is that it is difficult to hear in noisy situations and you can't tell where sounds are coming from. What you can do for Lexie is be on her right as much as you can, especially outside, in restaurants or in other noisy situations. When she starts school, you can look into FM systems or sound field systems. I was just put in front of the class and I did fine academically, but everyone is different. I try to make sure people I am talking to are on my right as much as I can. Here's an article on unilateral hearing loss in children: http://www.gohear.org/new/uniloss.html Good luck to you Cheryl (Clara's mom) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2004 Report Share Posted November 13, 2004 In a message dated 11/12/04 7:00:55 AM Eastern Standard Time, Listen-Up writes: > Should I rely on an ENT in my medium sized town to guide me in the > right direction for following Lexie's case? Should I take her to a > larger metropolitan area for treatment? Is the sedated ABR the next > logical step? I am feeling very skeptical now and not very trusting > after being misled for so long. Teri, We are in a small town that is close enough to NYC that I use to work there and commute daily on the trains. I initially relied on the local doctors. But our pediatrician is the one who sent us to the big city. When Ian's hearing loss was found and some serious syndromes became a possibility, he felt it was time to go to the big city, specifically Columbia Prebyterian's Babies Hospital. A quaint name for a hospital, but there is nothing small town or baby-ish about the place. I'm not a medical snob, thinking that only the big city doctors could be good. But after getting lousy service from a local ENT (who misdiagnosed Ian's loss due to incompetence) I became a skeptic. I relied on our pediatrician's recommendations because I trusted him and he IS good -- one of the best in Westchester. When I asked for a referral, my question was phrased like this: " If this were your child, who would you see? Where would you go? Let me worry about my insurance, I'll handle them. " He gave me several names of ENTs (Columbia), neurologists (NYC and White Plains), craniofacial specialists (Montefiore) and names for other specialists we needed at that time. My anecdotal story has a point. Properly diagnosing a kid's hearing loss can be tough, especially at very young ages. The big-city-center places see more these kids from all over your state, and sometimes the country. They see a wide range of issues, of combinations of issues. They are usually better trained in the fine details. Our son has a combination of issues and they are knowledgeable enough to realize that and address that. For instance, our dentist started pushing for Ian to get braces when he was about 12 because of an underbite (not crooked teeth). Ian has a craniofacial syndrome called Goldenhar. It is so mild that the dentist did not realize there was any anomoly in his skull measurements. An orthodondist would also not be likely to realize this. So, I took him down to Montefiore in NYC because they are a specialized craniofacial center. The doctors there said that the regular orthodontist would not be able to help the underbite because it was (as I suspected) due to Ian's undersized jaw. To make the dental adjustment would mean jaw surgery first, which Montefiore''s docs could do for him. But the good news here is that as Ian is progressing through puberty his jaw is reaching " normal " measurements. Jaw surgery now seems unlikely. Will he someday need braces? Maybe, but not now. So if you are feeling that the local people are just not quite getting it, and you are able to get to a place like Columbia Presbyterian, or , or Moog, or any other big-city type place, then do it. Best -- Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2004 Report Share Posted November 13, 2004 Hey Jill, I used to live in Westchester County, in a town called on. My sister lives in White Plains and my brother just moved from Rye to Connecticut. Small world. God bless. , 7, hearing Caleb, 5, bilateral SNHL, aided Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2004 Report Share Posted November 13, 2004 Hey Jill, I used to live in Westchester County, in a town called on. My sister lives in White Plains and my brother just moved from Rye to Connecticut. Small world. God bless. , 7, hearing Caleb, 5, bilateral SNHL, aided Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2004 Report Share Posted November 14, 2004 In a message dated 11/13/2004 9:21:28 PM Eastern Standard Time, tanya@... writes: Hey Jill, I used to live in Westchester County, in a town called on. My sister lives in White Plains and my brother just moved from Rye to Connecticut. Small world. God bless. , 7, hearing Caleb, 5, bilateral SNHL, aided , You lived a bit further south than we did, we were in North Salem. Our pediatricians, audi and ENT are in Mt Kisco and both my kids were born there. I worked in White Plains for a few years before going back to commuting to NYC. Now we live about the same distance north but east near the Hudson river, near Fishkill. It IS a small world. Best -- Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2004 Report Share Posted November 14, 2004 My other brother also commutes to the city everyday. He lives a a very small town called Mahopac. He was working a few blocks from the Twin Towers on 9 - 11. Scary stuff. Thanks for writing. . > Quote Link to comment Share on other sites More sharing options...
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