Guest guest Posted December 14, 2005 Report Share Posted December 14, 2005 My question was, will his " treatment " be any different? If not, I don't care. My son is too little to worry about passing it on to his kids. If he wants to find out when he is older, fine. I see no need to poke him with needles so we can have an answer. We did do one test because if that test was positive then his loss was probably progressive. It was negative. So that is as far as we have gone. Tawnya Ian, 2, mild/mod , 4, hearing cause of hearing loss when we went to the ENT he brought up determining the cause of the hearing loss. he asked for basic family history, (we have no known family history of SN hearing loss) nothing exceptional, about like any other new dr asking for family history. my boyfriend got upset because i told the ENT that at this point i didnt care what caused it, i didnt want to focus on that, that my main concern at the moment was getting her hearing aids. he thinks that we should find out soon what caused it. i told him that i only want to know if its genetic, simply so we can see if the kids are carriers. so they will know if they can pass the gene to their kids. he (my boyfriend) thinks we should find out the cause if we can, he says i'm just being emotional, (which seems to be his excuse for everything these days) but i really, truly dont care to find out what caused it, it can remain one of life's great mysteries for all i care. i just want to be sure to find out if it is genetic. i think the kids should know. my question i guess is that can dr's really determine what caused the loss? how often is it really genetic? and since we're doing what we can now, we cant change it, what is the point of finding out? (other than if it is genetic, of course) amanda All messages posted to this list are private and confidential. Each post is the intellectual property of the author and therefore subject to copyright restrictions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2005 Report Share Posted December 14, 2005 My question was, will his " treatment " be any different? If not, I don't care. My son is too little to worry about passing it on to his kids. If he wants to find out when he is older, fine. I see no need to poke him with needles so we can have an answer. We did do one test because if that test was positive then his loss was probably progressive. It was negative. So that is as far as we have gone. Tawnya Ian, 2, mild/mod , 4, hearing cause of hearing loss when we went to the ENT he brought up determining the cause of the hearing loss. he asked for basic family history, (we have no known family history of SN hearing loss) nothing exceptional, about like any other new dr asking for family history. my boyfriend got upset because i told the ENT that at this point i didnt care what caused it, i didnt want to focus on that, that my main concern at the moment was getting her hearing aids. he thinks that we should find out soon what caused it. i told him that i only want to know if its genetic, simply so we can see if the kids are carriers. so they will know if they can pass the gene to their kids. he (my boyfriend) thinks we should find out the cause if we can, he says i'm just being emotional, (which seems to be his excuse for everything these days) but i really, truly dont care to find out what caused it, it can remain one of life's great mysteries for all i care. i just want to be sure to find out if it is genetic. i think the kids should know. my question i guess is that can dr's really determine what caused the loss? how often is it really genetic? and since we're doing what we can now, we cant change it, what is the point of finding out? (other than if it is genetic, of course) amanda All messages posted to this list are private and confidential. Each post is the intellectual property of the author and therefore subject to copyright restrictions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2005 Report Share Posted December 14, 2005 My question was, will his " treatment " be any different? If not, I don't care. My son is too little to worry about passing it on to his kids. If he wants to find out when he is older, fine. I see no need to poke him with needles so we can have an answer. We did do one test because if that test was positive then his loss was probably progressive. It was negative. So that is as far as we have gone. Tawnya Ian, 2, mild/mod , 4, hearing cause of hearing loss when we went to the ENT he brought up determining the cause of the hearing loss. he asked for basic family history, (we have no known family history of SN hearing loss) nothing exceptional, about like any other new dr asking for family history. my boyfriend got upset because i told the ENT that at this point i didnt care what caused it, i didnt want to focus on that, that my main concern at the moment was getting her hearing aids. he thinks that we should find out soon what caused it. i told him that i only want to know if its genetic, simply so we can see if the kids are carriers. so they will know if they can pass the gene to their kids. he (my boyfriend) thinks we should find out the cause if we can, he says i'm just being emotional, (which seems to be his excuse for everything these days) but i really, truly dont care to find out what caused it, it can remain one of life's great mysteries for all i care. i just want to be sure to find out if it is genetic. i think the kids should know. my question i guess is that can dr's really determine what caused the loss? how often is it really genetic? and since we're doing what we can now, we cant change it, what is the point of finding out? (other than if it is genetic, of course) amanda All messages posted to this list are private and confidential. Each post is the intellectual property of the author and therefore subject to copyright restrictions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2005 Report Share Posted December 14, 2005 We have not tested our two girls to determine the cause of the hearing loss. We suspect it was due to some aggressive medical treatment given to preemies, but, that said, their triplet brother was far sicker at birth, received more meds, and has no hearing loss. I can't really fix it now, so can't figure what it will help at this point. My curiosity is not that strong. Edith mom to Lidy, Mimi (both mild/mod SNELL) and Owen (all almost 3 yr.) cause of hearing loss when we went to the ENT he brought up determining the cause of the hearing loss. he asked for basic family history, (we have no known family history of SN hearing loss) nothing exceptional, about like any other new dr asking for family history. my boyfriend got upset because i told the ENT that at this point i didnt care what caused it, i didnt want to focus on that, that my main concern at the moment was getting her hearing aids. he thinks that we should find out soon what caused it. i told him that i only want to know if its genetic, simply so we can see if the kids are carriers. so they will know if they can pass the gene to their kids. he (my boyfriend) thinks we should find out the cause if we can, he says i'm just being emotional, (which seems to be his excuse for everything these days) but i really, truly dont care to find out what caused it, it can remain one of life's great mysteries for all i care. i just want to be sure to find out if it is genetic. i think the kids should know. my question i guess is that can dr's really determine what caused the loss? how often is it really genetic? and since we're doing what we can now, we cant change it, what is the point of finding out? (other than if it is genetic, of course) amanda All messages posted to this list are private and confidential. Each post is the intellectual property of the author and therefore subject to copyright restrictions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2005 Report Share Posted December 14, 2005 > We did do one test because if that test was positive then his loss was probably progressive. It was negative. So that is as far as we have gone. > > > Tawnya > Ian, 2, mild/mod > , 4, hearing Tawnya, what test was this? The only test the ENT sent us for was a cat-scan, which he said my son would not have to be sedated for (he was 12 months old at the time) - and as you can imagine, it was a horrible experience, and they didn't end up doing the scan. There was no way he would remain still, and the technician didn't want to expose him the radiation knowing he wouldn't get a clear scan. We have since changed ENT's and the new ENT said there is no rush to cat-scan him, so I haven't been pushing the matter. I am extremely curious to know if my son's hearing loss will be progessive, so if you can let me know what test it was, and if it was invasive, please do. Thanks - mom of Miri - 7 - hearing Abigail - 4 1/2 - hearing - almost 2 - mild/moderate SNHL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2005 Report Share Posted December 14, 2005 > We did do one test because if that test was positive then his loss was probably progressive. It was negative. So that is as far as we have gone. > > > Tawnya > Ian, 2, mild/mod > , 4, hearing Tawnya, what test was this? The only test the ENT sent us for was a cat-scan, which he said my son would not have to be sedated for (he was 12 months old at the time) - and as you can imagine, it was a horrible experience, and they didn't end up doing the scan. There was no way he would remain still, and the technician didn't want to expose him the radiation knowing he wouldn't get a clear scan. We have since changed ENT's and the new ENT said there is no rush to cat-scan him, so I haven't been pushing the matter. I am extremely curious to know if my son's hearing loss will be progessive, so if you can let me know what test it was, and if it was invasive, please do. Thanks - mom of Miri - 7 - hearing Abigail - 4 1/2 - hearing - almost 2 - mild/moderate SNHL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2005 Report Share Posted December 14, 2005 > We did do one test because if that test was positive then his loss was probably progressive. It was negative. So that is as far as we have gone. > > > Tawnya > Ian, 2, mild/mod > , 4, hearing Tawnya, what test was this? The only test the ENT sent us for was a cat-scan, which he said my son would not have to be sedated for (he was 12 months old at the time) - and as you can imagine, it was a horrible experience, and they didn't end up doing the scan. There was no way he would remain still, and the technician didn't want to expose him the radiation knowing he wouldn't get a clear scan. We have since changed ENT's and the new ENT said there is no rush to cat-scan him, so I haven't been pushing the matter. I am extremely curious to know if my son's hearing loss will be progessive, so if you can let me know what test it was, and if it was invasive, please do. Thanks - mom of Miri - 7 - hearing Abigail - 4 1/2 - hearing - almost 2 - mild/moderate SNHL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2005 Report Share Posted December 14, 2005 Since we had no family history of hearing loss, we did not go through with the testing for possible cause for our first daughter. I had a great pregnancy and delivery, so there seemed to just be no real cause other than it just happened. When I was pregnant with my younger daughter, my oldest daughter lost what residual hearing she had over night around three years of age. She became a cochlear implant candidate at that time. We live in Houston and part of the process for implantation is genetic screening. We learned that her loss was in fact due to a recessive gene called connexian 26. My husband and I are both carriers, hearing. We learned we have a 1 in 4 chance each pregnancy to have the dominance of the connexian 26 ( deaf offspring). Our second daughter failed the newborn screen so we knew she had connexian 26... which was confirmed through a blood test. I did not realize the depth of the " mommy guilt " I carried around... the wondering if I had only done this or not done that during the pregnancy for the older daughter for three years. It was a release of that feeling to know it was nothing I had done to my daughter. So in that sense I was happy to have the test. I agree it is good to know the genetics. We learned that connexian is becoming more and more common as a reason for progressive-profound hearing loss. It is stronger in the gene pool as more carriers marry and have dominant kiddos. I hope this helped... mommy to 5 yrs. profound w/ CI and 2 yrs. profound w/ CI M. Bates Science Instructional Assistant Curriculum & Instructional Services Spring ISD >>> etarter@... 12/14 12:55 PM >>> We have not tested our two girls to determine the cause of the hearing loss. We suspect it was due to some aggressive medical treatment given to preemies, but, that said, their triplet brother was far sicker at birth, received more meds, and has no hearing loss. I can't really fix it now, so can't figure what it will help at this point. My curiosity is not that strong. Edith mom to Lidy, Mimi (both mild/mod SNELL) and Owen (all almost 3 yr.) cause of hearing loss when we went to the ENT he brought up determining the cause of the hearing loss. he asked for basic family history, (we have no known family history of SN hearing loss) nothing exceptional, about like any other new dr asking for family history. my boyfriend got upset because i told the ENT that at this point i didnt care what caused it, i didnt want to focus on that, that my main concern at the moment was getting her hearing aids. he thinks that we should find out soon what caused it. i told him that i only want to know if its genetic, simply so we can see if the kids are carriers. so they will know if they can pass the gene to their kids. he (my boyfriend) thinks we should find out the cause if we can, he says i'm just being emotional, (which seems to be his excuse for everything these days) but i really, truly dont care to find out what caused it, it can remain one of life's great mysteries for all i care. i just want to be sure to find out if it is genetic. i think the kids should know. my question i guess is that can dr's really determine what caused the loss? how often is it really genetic? and since we're doing what we can now, we cant change it, what is the point of finding out? (other than if it is genetic, of course) amanda All messages posted to this list are private and confidential. Each post is the intellectual property of the author and therefore subject to copyright restrictions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2005 Report Share Posted December 14, 2005 Since we had no family history of hearing loss, we did not go through with the testing for possible cause for our first daughter. I had a great pregnancy and delivery, so there seemed to just be no real cause other than it just happened. When I was pregnant with my younger daughter, my oldest daughter lost what residual hearing she had over night around three years of age. She became a cochlear implant candidate at that time. We live in Houston and part of the process for implantation is genetic screening. We learned that her loss was in fact due to a recessive gene called connexian 26. My husband and I are both carriers, hearing. We learned we have a 1 in 4 chance each pregnancy to have the dominance of the connexian 26 ( deaf offspring). Our second daughter failed the newborn screen so we knew she had connexian 26... which was confirmed through a blood test. I did not realize the depth of the " mommy guilt " I carried around... the wondering if I had only done this or not done that during the pregnancy for the older daughter for three years. It was a release of that feeling to know it was nothing I had done to my daughter. So in that sense I was happy to have the test. I agree it is good to know the genetics. We learned that connexian is becoming more and more common as a reason for progressive-profound hearing loss. It is stronger in the gene pool as more carriers marry and have dominant kiddos. I hope this helped... mommy to 5 yrs. profound w/ CI and 2 yrs. profound w/ CI M. Bates Science Instructional Assistant Curriculum & Instructional Services Spring ISD >>> etarter@... 12/14 12:55 PM >>> We have not tested our two girls to determine the cause of the hearing loss. We suspect it was due to some aggressive medical treatment given to preemies, but, that said, their triplet brother was far sicker at birth, received more meds, and has no hearing loss. I can't really fix it now, so can't figure what it will help at this point. My curiosity is not that strong. Edith mom to Lidy, Mimi (both mild/mod SNELL) and Owen (all almost 3 yr.) cause of hearing loss when we went to the ENT he brought up determining the cause of the hearing loss. he asked for basic family history, (we have no known family history of SN hearing loss) nothing exceptional, about like any other new dr asking for family history. my boyfriend got upset because i told the ENT that at this point i didnt care what caused it, i didnt want to focus on that, that my main concern at the moment was getting her hearing aids. he thinks that we should find out soon what caused it. i told him that i only want to know if its genetic, simply so we can see if the kids are carriers. so they will know if they can pass the gene to their kids. he (my boyfriend) thinks we should find out the cause if we can, he says i'm just being emotional, (which seems to be his excuse for everything these days) but i really, truly dont care to find out what caused it, it can remain one of life's great mysteries for all i care. i just want to be sure to find out if it is genetic. i think the kids should know. my question i guess is that can dr's really determine what caused the loss? how often is it really genetic? and since we're doing what we can now, we cant change it, what is the point of finding out? (other than if it is genetic, of course) amanda All messages posted to this list are private and confidential. Each post is the intellectual property of the author and therefore subject to copyright restrictions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2005 Report Share Posted December 14, 2005 Since we had no family history of hearing loss, we did not go through with the testing for possible cause for our first daughter. I had a great pregnancy and delivery, so there seemed to just be no real cause other than it just happened. When I was pregnant with my younger daughter, my oldest daughter lost what residual hearing she had over night around three years of age. She became a cochlear implant candidate at that time. We live in Houston and part of the process for implantation is genetic screening. We learned that her loss was in fact due to a recessive gene called connexian 26. My husband and I are both carriers, hearing. We learned we have a 1 in 4 chance each pregnancy to have the dominance of the connexian 26 ( deaf offspring). Our second daughter failed the newborn screen so we knew she had connexian 26... which was confirmed through a blood test. I did not realize the depth of the " mommy guilt " I carried around... the wondering if I had only done this or not done that during the pregnancy for the older daughter for three years. It was a release of that feeling to know it was nothing I had done to my daughter. So in that sense I was happy to have the test. I agree it is good to know the genetics. We learned that connexian is becoming more and more common as a reason for progressive-profound hearing loss. It is stronger in the gene pool as more carriers marry and have dominant kiddos. I hope this helped... mommy to 5 yrs. profound w/ CI and 2 yrs. profound w/ CI M. Bates Science Instructional Assistant Curriculum & Instructional Services Spring ISD >>> etarter@... 12/14 12:55 PM >>> We have not tested our two girls to determine the cause of the hearing loss. We suspect it was due to some aggressive medical treatment given to preemies, but, that said, their triplet brother was far sicker at birth, received more meds, and has no hearing loss. I can't really fix it now, so can't figure what it will help at this point. My curiosity is not that strong. Edith mom to Lidy, Mimi (both mild/mod SNELL) and Owen (all almost 3 yr.) cause of hearing loss when we went to the ENT he brought up determining the cause of the hearing loss. he asked for basic family history, (we have no known family history of SN hearing loss) nothing exceptional, about like any other new dr asking for family history. my boyfriend got upset because i told the ENT that at this point i didnt care what caused it, i didnt want to focus on that, that my main concern at the moment was getting her hearing aids. he thinks that we should find out soon what caused it. i told him that i only want to know if its genetic, simply so we can see if the kids are carriers. so they will know if they can pass the gene to their kids. he (my boyfriend) thinks we should find out the cause if we can, he says i'm just being emotional, (which seems to be his excuse for everything these days) but i really, truly dont care to find out what caused it, it can remain one of life's great mysteries for all i care. i just want to be sure to find out if it is genetic. i think the kids should know. my question i guess is that can dr's really determine what caused the loss? how often is it really genetic? and since we're doing what we can now, we cant change it, what is the point of finding out? (other than if it is genetic, of course) amanda All messages posted to this list are private and confidential. Each post is the intellectual property of the author and therefore subject to copyright restrictions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2005 Report Share Posted December 14, 2005 I believe it was the Connexin 26 thing? I know I am butchering the spelling! Tawnya Re: cause of hearing loss > We did do one test because if that test was positive then his loss was probably progressive. It was negative. So that is as far as we have gone. > > > Tawnya > Ian, 2, mild/mod > , 4, hearing Tawnya, what test was this? The only test the ENT sent us for was a cat-scan, which he said my son would not have to be sedated for (he was 12 months old at the time) - and as you can imagine, it was a horrible experience, and they didn't end up doing the scan. There was no way he would remain still, and the technician didn't want to expose him the radiation knowing he wouldn't get a clear scan. We have since changed ENT's and the new ENT said there is no rush to cat-scan him, so I haven't been pushing the matter. I am extremely curious to know if my son's hearing loss will be progessive, so if you can let me know what test it was, and if it was invasive, please do. Thanks - mom of Miri - 7 - hearing Abigail - 4 1/2 - hearing - almost 2 - mild/moderate SNHL All messages posted to this list are private and confidential. Each post is the intellectual property of the author and therefore subject to copyright restrictions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2005 Report Share Posted December 14, 2005 , The good thing about hearing loss is that you don't need to know the cause to take action on getting heairng aids or choosing a communication method. In our area, it is common practice for newly diagnosed children to have a genetic screening for the known genetic mutations that cause hearing loss, a CT scan to make sure the cochlea are formed properly, a renal ultrasound to ensure the kidneys are working well (because the kidneys form at the same time as the cochlea in a fetus), and an eye exam to identify any vision problems. Also, a full medical history is given, including information about the pregnancy/labor/delivery and any complications, as these can contribute to hearing loss. We did the genetic screening (blood from child and both parents) as I had no complications during pregnancy and we have no known family history of hearing loss. It turns out that Hadley's loss is due to Connexin 26; both my husband and I are carriers and gave Hadley each of our recessive genes for Cx26. I am glad that we know the cause because we can read up about all the latest research on Cx26. We have used this information to argue for educational services for Hadley, be more proactive about hearing evaluations, participating in research studies to further the knowledge about Cx26, and be better prepared for the future. Also, since Hadley is our first child, this enabled us to make some decisions about future children (as there is a 25% we will have another child with a hearing loss). We've also been able to share this information with our siblings so that they can decide whether to have themselves tested to know if they carry the same Cx26 gene. If the genetic tests had come back negative, it would not have changed any of the decisions we have made for Hadley. However, knowing the cause has helped us see the big picture and make more informed choices. And, as I mentioned above, it was instrumental in arguing for services from our local school district. Harvard's Center for Hereditary Deafness has a great booklet that you can download for more information about genetic testing, the known genetic causes of deafness/hearing loss, and other basic information. http://hearing.harvard.edu/index.htm Kerry -------------- Original message -------------- > when we went to the ENT he brought up determining the cause of the > hearing loss. he asked for basic family history, (we have no known > family history of SN hearing loss) nothing exceptional, about like any > other new dr asking for family history. my boyfriend got upset because > i told the ENT that at this point i didnt care what caused it, i didnt > want to focus on that, that my main concern at the moment was getting > her hearing aids. he thinks that we should find out soon what caused > it. i told him that i only want to know if its genetic, simply so we > can see if the kids are carriers. so they will know if they can pass > the gene to their kids. he (my boyfriend) thinks we should find out the > cause if we can, he says i'm just being emotional, (which seems to be > his excuse for everything these days) but i really, truly dont care to > find out what caused it, it can remain one of life's great mysteries > for all i care. i just want to be sure to find out if it is genetic. i > think the kids should know. > my question i guess is that can dr's really determine what caused the > loss? how often is it really genetic? and since we're doing what we can > now, we cant change it, what is the point of finding out? (other than > if it is genetic, of course) > amanda > > > > > > > All messages posted to this list are private and confidential. Each post is the > intellectual property of the author and therefore subject to copyright > restrictions. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2005 Report Share Posted December 14, 2005 , The good thing about hearing loss is that you don't need to know the cause to take action on getting heairng aids or choosing a communication method. In our area, it is common practice for newly diagnosed children to have a genetic screening for the known genetic mutations that cause hearing loss, a CT scan to make sure the cochlea are formed properly, a renal ultrasound to ensure the kidneys are working well (because the kidneys form at the same time as the cochlea in a fetus), and an eye exam to identify any vision problems. Also, a full medical history is given, including information about the pregnancy/labor/delivery and any complications, as these can contribute to hearing loss. We did the genetic screening (blood from child and both parents) as I had no complications during pregnancy and we have no known family history of hearing loss. It turns out that Hadley's loss is due to Connexin 26; both my husband and I are carriers and gave Hadley each of our recessive genes for Cx26. I am glad that we know the cause because we can read up about all the latest research on Cx26. We have used this information to argue for educational services for Hadley, be more proactive about hearing evaluations, participating in research studies to further the knowledge about Cx26, and be better prepared for the future. Also, since Hadley is our first child, this enabled us to make some decisions about future children (as there is a 25% we will have another child with a hearing loss). We've also been able to share this information with our siblings so that they can decide whether to have themselves tested to know if they carry the same Cx26 gene. If the genetic tests had come back negative, it would not have changed any of the decisions we have made for Hadley. However, knowing the cause has helped us see the big picture and make more informed choices. And, as I mentioned above, it was instrumental in arguing for services from our local school district. Harvard's Center for Hereditary Deafness has a great booklet that you can download for more information about genetic testing, the known genetic causes of deafness/hearing loss, and other basic information. http://hearing.harvard.edu/index.htm Kerry -------------- Original message -------------- > when we went to the ENT he brought up determining the cause of the > hearing loss. he asked for basic family history, (we have no known > family history of SN hearing loss) nothing exceptional, about like any > other new dr asking for family history. my boyfriend got upset because > i told the ENT that at this point i didnt care what caused it, i didnt > want to focus on that, that my main concern at the moment was getting > her hearing aids. he thinks that we should find out soon what caused > it. i told him that i only want to know if its genetic, simply so we > can see if the kids are carriers. so they will know if they can pass > the gene to their kids. he (my boyfriend) thinks we should find out the > cause if we can, he says i'm just being emotional, (which seems to be > his excuse for everything these days) but i really, truly dont care to > find out what caused it, it can remain one of life's great mysteries > for all i care. i just want to be sure to find out if it is genetic. i > think the kids should know. > my question i guess is that can dr's really determine what caused the > loss? how often is it really genetic? and since we're doing what we can > now, we cant change it, what is the point of finding out? (other than > if it is genetic, of course) > amanda > > > > > > > All messages posted to this list are private and confidential. Each post is the > intellectual property of the author and therefore subject to copyright > restrictions. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2005 Report Share Posted December 14, 2005 Tawnya, May I ask--What test did you do that would tell you whether the hearing loss is progressive? THX, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2005 Report Share Posted December 14, 2005 My understanding regarding Connexin 26 snd 30 is that the jury is still out as to whether the hearing loss will be progressive. Also, I had never heard that a negative cxn 26/30 test means that a " non-syndromic " loss will not be progressive. I so hope that this is true. I still worry about the possibility of my baby's loss being a progressive loss. For those who want more info possible hearing loss causes, check out: http://hearing.harvard.edu/research.htm Cheers! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2005 Report Share Posted December 14, 2005 I definately could be wrong about which one it was. I will ask the Audi tomorrow. Tawnya Re: cause of hearing loss My understanding regarding Connexin 26 snd 30 is that the jury is still out as to whether the hearing loss will be progressive. Also, I had never heard that a negative cxn 26/30 test means that a " non-syndromic " loss will not be progressive. I so hope that this is true. I still worry about the possibility of my baby's loss being a progressive loss. For those who want more info possible hearing loss causes, check out: http://hearing.harvard.edu/research.htm Cheers! All messages posted to this list are private and confidential. Each post is the intellectual property of the author and therefore subject to copyright restrictions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2005 Report Share Posted December 14, 2005 Our boys' hearing loss isn't because of connexin and is a non-syndromic hearing loss. We believe it to be an x-linked recessive hearing loss as there are several males on my side of the family who have varying degrees of hearing loss (including my brother, my nephew - who is my sister's son - and my maternal uncle). That being said, we didn't believe our boys to have a progressive loss (and - that was *always* my worst fear for my boys) but then my older son had a huge drop in the last year. Interesting that his audiogram still looks more or less the same - but his word recognition scores were what tumbled. 4% on his last test. It's weird to say but once the drop was verified, we moved ahead with Tom's implant (Tom was very, very keen on having it done) and it was almost a relief. I know that sounds strange but given that Tom is a really oral guy, at the point that his hearing loss had dropped so much it was pretty clear that we'd go with the implant. The fact that he was so clearly a candidate took away the shades of gray I think... I'm probably babbling - it's time to go to bed! :-) Barbara jbkdarby wrote: > My understanding regarding Connexin 26 snd 30 is that the jury is still > out as to whether the hearing loss will be progressive. Also, I had > never heard that a negative cxn 26/30 test means that a " non-syndromic " > loss will not be progressive. I so hope that this is true. I still > worry about the possibility of my baby's loss being a progressive > loss. For those who want more info possible hearing loss causes, check > out: > > http://hearing.harvard.edu/research.htm > > Cheers! > > > > > > > > > > All messages posted to this list are private and confidential. Each > post is the intellectual property of the author and therefore subject > to copyright restrictions. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2005 Report Share Posted December 14, 2005 Our boys' hearing loss isn't because of connexin and is a non-syndromic hearing loss. We believe it to be an x-linked recessive hearing loss as there are several males on my side of the family who have varying degrees of hearing loss (including my brother, my nephew - who is my sister's son - and my maternal uncle). That being said, we didn't believe our boys to have a progressive loss (and - that was *always* my worst fear for my boys) but then my older son had a huge drop in the last year. Interesting that his audiogram still looks more or less the same - but his word recognition scores were what tumbled. 4% on his last test. It's weird to say but once the drop was verified, we moved ahead with Tom's implant (Tom was very, very keen on having it done) and it was almost a relief. I know that sounds strange but given that Tom is a really oral guy, at the point that his hearing loss had dropped so much it was pretty clear that we'd go with the implant. The fact that he was so clearly a candidate took away the shades of gray I think... I'm probably babbling - it's time to go to bed! :-) Barbara jbkdarby wrote: > My understanding regarding Connexin 26 snd 30 is that the jury is still > out as to whether the hearing loss will be progressive. Also, I had > never heard that a negative cxn 26/30 test means that a " non-syndromic " > loss will not be progressive. I so hope that this is true. I still > worry about the possibility of my baby's loss being a progressive > loss. For those who want more info possible hearing loss causes, check > out: > > http://hearing.harvard.edu/research.htm > > Cheers! > > > > > > > > > > All messages posted to this list are private and confidential. Each > post is the intellectual property of the author and therefore subject > to copyright restrictions. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2005 Report Share Posted December 14, 2005 Our boys' hearing loss isn't because of connexin and is a non-syndromic hearing loss. We believe it to be an x-linked recessive hearing loss as there are several males on my side of the family who have varying degrees of hearing loss (including my brother, my nephew - who is my sister's son - and my maternal uncle). That being said, we didn't believe our boys to have a progressive loss (and - that was *always* my worst fear for my boys) but then my older son had a huge drop in the last year. Interesting that his audiogram still looks more or less the same - but his word recognition scores were what tumbled. 4% on his last test. It's weird to say but once the drop was verified, we moved ahead with Tom's implant (Tom was very, very keen on having it done) and it was almost a relief. I know that sounds strange but given that Tom is a really oral guy, at the point that his hearing loss had dropped so much it was pretty clear that we'd go with the implant. The fact that he was so clearly a candidate took away the shades of gray I think... I'm probably babbling - it's time to go to bed! :-) Barbara jbkdarby wrote: > My understanding regarding Connexin 26 snd 30 is that the jury is still > out as to whether the hearing loss will be progressive. Also, I had > never heard that a negative cxn 26/30 test means that a " non-syndromic " > loss will not be progressive. I so hope that this is true. I still > worry about the possibility of my baby's loss being a progressive > loss. For those who want more info possible hearing loss causes, check > out: > > http://hearing.harvard.edu/research.htm > > Cheers! > > > > > > > > > > All messages posted to this list are private and confidential. Each > post is the intellectual property of the author and therefore subject > to copyright restrictions. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2005 Report Share Posted December 14, 2005 From what I understand, hearing loss is progressive in about 20% of the population with hearing loss. I don't think they have enough information at this point to predict which losses will be progressive, with the exception of LVAs, where a blow to the head or change in pressure could cause further hearing loss. Otherwise, it's just wait-and-see. My son's loss is due to connexin 26; it's unclear if he lost hearing between his ABR at one month and his behavioral testing at one year, or if the difference was due to fluid, testing methods, etc. But he hasn't lost any more hearing in the past 6 years. I just take it one test at a time. Stefanie Mom to Ben, 7, severe/profound HOH, and Isabella, 10, mild loss on 12/14/05 9:31 PM, jbkdarby at jbkdarby@... wrote: > My understanding regarding Connexin 26 snd 30 is that the jury is still > out as to whether the hearing loss will be progressive. Also, I had > never heard that a negative cxn 26/30 test means that a " non-syndromic " > loss will not be progressive. I so hope that this is true. I still > worry about the possibility of my baby's loss being a progressive > loss. For those who want more info possible hearing loss causes, check > out: > > http://hearing.harvard.edu/research.htm > > Cheers! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2005 Report Share Posted December 14, 2005 From what I understand, hearing loss is progressive in about 20% of the population with hearing loss. I don't think they have enough information at this point to predict which losses will be progressive, with the exception of LVAs, where a blow to the head or change in pressure could cause further hearing loss. Otherwise, it's just wait-and-see. My son's loss is due to connexin 26; it's unclear if he lost hearing between his ABR at one month and his behavioral testing at one year, or if the difference was due to fluid, testing methods, etc. But he hasn't lost any more hearing in the past 6 years. I just take it one test at a time. Stefanie Mom to Ben, 7, severe/profound HOH, and Isabella, 10, mild loss on 12/14/05 9:31 PM, jbkdarby at jbkdarby@... wrote: > My understanding regarding Connexin 26 snd 30 is that the jury is still > out as to whether the hearing loss will be progressive. Also, I had > never heard that a negative cxn 26/30 test means that a " non-syndromic " > loss will not be progressive. I so hope that this is true. I still > worry about the possibility of my baby's loss being a progressive > loss. For those who want more info possible hearing loss causes, check > out: > > http://hearing.harvard.edu/research.htm > > Cheers! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2005 Report Share Posted December 14, 2005 From what I understand, hearing loss is progressive in about 20% of the population with hearing loss. I don't think they have enough information at this point to predict which losses will be progressive, with the exception of LVAs, where a blow to the head or change in pressure could cause further hearing loss. Otherwise, it's just wait-and-see. My son's loss is due to connexin 26; it's unclear if he lost hearing between his ABR at one month and his behavioral testing at one year, or if the difference was due to fluid, testing methods, etc. But he hasn't lost any more hearing in the past 6 years. I just take it one test at a time. Stefanie Mom to Ben, 7, severe/profound HOH, and Isabella, 10, mild loss on 12/14/05 9:31 PM, jbkdarby at jbkdarby@... wrote: > My understanding regarding Connexin 26 snd 30 is that the jury is still > out as to whether the hearing loss will be progressive. Also, I had > never heard that a negative cxn 26/30 test means that a " non-syndromic " > loss will not be progressive. I so hope that this is true. I still > worry about the possibility of my baby's loss being a progressive > loss. For those who want more info possible hearing loss causes, check > out: > > http://hearing.harvard.edu/research.htm > > Cheers! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2005 Report Share Posted December 14, 2005 Hi , After was diagnosed, I did some research about hearing loss online. I discovered that there " could " be some syndromes that have hearing loss as one of the symptoms. I tried to pursuade our then ENT to order tests, but he wouldn't....didn't see the need. As fate would have it, we switched ENTs as our first one left his practice and we didn't know where he went. Our second ENT ordered blood work for the tests.....everything came back negative. The only thing this ENT wouldn't do was the CAT scan....thought was too young at 4 years old to do that. Because we were unsure if the loss occured at birth or if it had occurred after that I wanted that CAT scan to see if there were any abnormalities. So we switched to a ENT that specialied in hearing loss. One of her first questions was if we had had any blood work done and if there was a CAT scan. So she is the one that sent for the CAT scan. Do we know what caused her loss??? No. But we know that it's not one of the Connexin's that they test. We know she doesn't have any syndromes that they tested for and we know that the loss is not cause by any abnormalites in the cochlea or by enlarged ventricular aqueduct syndrome. We have all sorts of theories on what may have caused her loss, but it really doesn't matter. She has the loss and there is nothing we can do about it. So we moved past that now focus on what she needs. Debbie, mom to , 6, moderate SNHL and , 3 hearing abaugh7080 wrote: i told the ENT that at this point i didnt care what caused it, i didnt want to focus on that, that my main concern at the moment was getting her hearing aids. he thinks that we should find out soon what caused it. i told him that i only want to know if its genetic, simply so we can see if the kids are carriers. so they will know if they can pass the gene to their kids. Some men see things as they are and ask why. Others dream things that never were and ask why not. G.B Shaw --------------------------------- Yahoo! Shopping Find Great Deals on Holiday Gifts at Yahoo! Shopping Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2005 Report Share Posted December 15, 2005 In a message dated 12/14/2005 1:06:08 P.M. Eastern Standard Time, abaugh7080@... writes: .... but i really, truly dont care to find out what caused it, it can remain one of life's great mysteries for all i care. i just want to be sure to find out if it is genetic. i think the kids should know. my question i guess is that can dr's really determine what caused the loss? how often is it really genetic? and since we're doing what we can now, we cant change it, what is the point of finding out? (other than if it is genetic, of course) amanda Sometimes the reason for knowing the " why " is to be able to predict the future of the loss. Depending on that information, your decisions may change. Sometimes it's so you can alert your kid to the fact that they can pass it on. But the here-and-now decisions like hearing aids, FMs, TODs and stuff like that really wouldn't change for us. It's the long term stuff that does. For instance, our game plan for our son is based on the fact that he has a progressive loss and may be deaf by the time he is an adult. If we were working under the assumption that his loss would never get much worse than it is, then our decisions might be different. Knowing that Ian's loss is progressive, we wanted to have him able to communicate even if he is completely deaf. I pushed until I found a sign teacher because I know that a CI isn't a miracle cure for all kids and out Ian may never become a candidate. One set of docs says a CI is a possibility, one says it isn't. But what they both say is that he very likely will become profoundly deaf. So we use that info to set our long-range goals We did not do the blood tests for a Connexin related loss because basically I goofed. The blood work needed to be done at Montefiore (hospital in NYC). It turned out I gave the tech the other 'scripts and not that one. I thought it was done, but it never was. And we haven't been back there in a while. That said, I'm not really that driven to have that test done since one set of doctors says it's not needed and one says it is. I'm not going to run all over the place for something that really doesn't matter right now. I'll have that testing done when it's convenient for us. And the only reason I'll have it done is so that Ian will know if he could possibly pass the gene onto his own kids. Since grand-kids are not on our short-term plan, the testing isn't high on my to-do list. However, given Ian's other issues, I wanted to know if there was a genetic syndrome at play. When he was about 10 and I heard from a friend that puberty can be quite the experience for some syndromes. Her son has one and the hormones+syndrome made things very hard for that boy. I wanted to know what, if anything, was coming my way. So, I went to a geneticist. He took a complete and very detailed family history and a very detailed medical history for Ian. He diagnosed a syndrome that is not genetic. So, I now have a clue about the " why " and some idea of what's coming for him. Now after saying all that, you are at the beginning of this process. That alone is traumatic and chaotic enough. I didn't go looking for an answer to the genetic question until we were done with all the other stuff. Ian was aided, I had fought the district for appropriate services ... I could use the word " deaf " confidently in a sentence without choking back tears. It was only at that point that I was emotionally ready to deal with whatever the geneticist had to tell me. Before then, I think it would have been the straw that broke me. Honestly, there were times when I felt like I was hanging on by a very thin thread. Counseling helped, support of my best friend helped ... and after a while I got accustomed to my new reality. Only then could I handle any more. You do what you feel you can handle. Take it one step at a time. If the genetic answer will help you with decision-making now, then I'd do it. But if not, you can wait until you feel you are ready. I say that we'll get Ian tested when he's in college, when marriage and family are not a distant blip on his horizon. Best -- Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2005 Report Share Posted December 15, 2005 In a message dated 12/15/2005 10:12:58 A.M. Central Standard Time, JillcWood@... writes: However, given Ian's other issues, I wanted to know if there was a genetic syndrome at play. When he was about 10 and I heard from a friend that puberty can be quite the experience for some syndromes. Her son has one and the hormones+syndrome made things very hard for that boy. I wanted to know what, if anything, was coming my way. Hi Jill and everyone else, I thought I would chime in here. If it is a syndrome it is good to know only because of what else a syndrome can potentially do. My daughter has a variant of Cogan's syndrome - something very rare with things worse that hearing loss sometimes associated with it - some of which she has. I don't think it ever gets easier finding everything out. My daughter now has a ci and hearing aid. Friday we found out she had another 15-30 dbl drop in her hearing in her unimplanted ear, and I have been depressed ever since. Not sure if it is because of the hearing loss decreasing again, what potentially it is doing elsewhere in her body or if it is because she is entering puberty and so I am wondering if we are starting on another roller coaster with her (one I would really rather never be on). Cathy Quote Link to comment Share on other sites More sharing options...
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