Guest guest Posted May 16, 2006 Report Share Posted May 16, 2006 In a message dated 5/16/2006 10:18:15 A.M. Eastern Daylight Time, Lk writes: I am currently fighting with my ent for tubes, and considering changing ent's. That is a whole other story. My son's hearing loss stems from congentital CMV which I contracted while pregnant. He has developmental delays in other areas as well, but is doing great. I am located in New York. Lynn, Welcome to the group! We are also in NY, in Dutchess County, north of NYC and right near the Hudson River. Where are you in NY. there are a few of us here, spread around the state. Have you been in touch with the Early Intervention people? Our son's hearing loss was discovered when he was about 7-years-old, so I have no experience with that, but many people here do. My sister's son was in a local EI program for speech delays and did quite well with it. If you are uncomfortable with your ENT, then go find another one and get a second opinion. We went through a few ENTs and audiologists before finding the people we liked and trusted. Plus, I happen to like getting second opinions. It's covered under most insurance plans, and in my opinion, the more information I can get, the better. Again, welcome to the group. It's a very supportive and informative place. Best -- Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2006 Report Share Posted May 16, 2006 I just wanted to introduce myself. My son is 19 months old and wears hearing aids in both ears. Initially, his left tested mild mod and his right mod severe. Since then, the tests are coming back more even in the mod to mod sev. He has been wearing the aids since around 2 months of age. We have not had an accurate hearing test in awhile due to constant fluid in his ears. I am currently fighting with my ent for tubes, and considering changing ent's. That is a whole other story. My son's hearing loss stems from congentital CMV which I contracted while pregnant. He has developmental delays in other areas as well, but is doing great. I am located in New York. Lynn Re: autoimmune disorders Nina - thank you for that info!! Hannah actually havs very bad eczema!! I have a script for the steroids but since they have been linked to skin cancer when used in children I avoid them as much as possible. I'll have to check out that lotion that you recommeded - it might give her some relief. Poor baby - her legs are so scarred already. Although Jake doesn't have a big outbreak of it I did notice a few small patches when he was little.....Hannah's was the same way - it started with two patches on her cheeks that they thought was a fungus.....like everything else we had to go to several different doctors before we got the diagnosis of eczema....hmmmmmm......makes you wonder! I don't know about the food allergies. She doesn't eat much as it is and its a fight to get her to eat - I wonder if she is allergic to some things refusing to eat it is her way of her body telling her not to? I guess I'll have to try a few things. Her dialy routine consists of cereal/strawberry milk sandwich or chicken nuggets fruit/crackers/or snack chicken nuggest/corn/bread/spaghetti What are some things that are in those foods that I should try to eliminate? Again - thanks! Nina Glazer nina525@...> wrote: Sara, I just found a bunch of info on Autoimmune Inner Ear Disease (AIED) when I googled for " autoimmune hearing " . Does Hannah have excema by any chance? That is caused by a compromised immune system and often improves by adding flax and borage oil to one's diet. I developed excema on my hands after my C-section; it's common to get it after surgery since your immune system becomes compromised. I suffered with it for 10 months and then I discovered a lotion with borage oil that people said " cured " excema. After 3-4 weeks my excema was gone. I recommended the lotion to another ovusofter who'd had excema on her face for five years. She said that it cleared up and went away after a month of using the lotion. Obviously you can't put lotion in your DD's ears, but if she is suffering from an autoimmune disorder then perhaps borage and flax oil supplements would help? Nordic Naturals sells a chewable fish oil supplement with borage oil in it but it says for ages 5 and up: https://www.nordicnaturals.com/direct/prodsummary.asp?ID=54 They also have the pro-EFA liquid that we've been giving to DS: https://www.nordicnaturals.com/direct/prodsummary.asp?ID=50 (we put it in his milk and then use one of those $5 formula mixers to blend the oil into the milk so it's not in big clumps). Speaking of milk, I wonder Hannah has a milk allergy or a wheat allergy that could be making the autoimmune disorder worse? I've read about that. I suspect that my son, Jack, would benefit from a casein-free diet so I'm looking into that. He does like goat's milk, which I believe is nearly casein-free. I hope you get to the bottom of this. And thank you for pointing me to this group!!!! Nina --- saraandchadd saraandchadd@...> wrote: > My audi said this is one thing they will test for. > Does anyone have > anymore info on this? She said there are a ton. I > have never heard of > an autoimmune disease that affects hearing so please > fill me in. > > Do you think this could be in the " blood work " that > her origianl ENT > did when we found out Hannah was HOH? I go tomorrow > to get a copy of > that paperwork to see exactly what was tested - the > tests > were " normal " according to the ENT. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2006 Report Share Posted May 16, 2006 Hi Lynn - I'm Barbara, mom to Tom and Sam. Tom's 13 and Sam is 11 - they both are deaf. Seven months ago, Tom had surgery and now has a cochlear implant - Sam's surgery is next week! I'm glad you're here - this is such a great place! Welcome! Barbara Lk wrote: > I just wanted to introduce myself. My son is 19 months old and wears hearing aids in both ears. Initially, his left tested mild mod and his right mod severe. Since then, the tests are coming back more even in the mod to mod sev. He has been wearing the aids since around 2 months of age. We have not had an accurate hearing test in awhile due to constant fluid in his ears. I am currently fighting with my ent for tubes, and considering changing ent's. That is a whole other story. My son's hearing loss stems from congentital CMV which I contracted while pregnant. He has developmental delays in other areas as well, but is doing great. > > I am located in New York. > > Lynn > > Re: autoimmune disorders > > > Nina - thank you for that info!! Hannah actually havs very bad eczema!! I have a > script for the steroids but since they have been linked to skin cancer when used > in children I avoid them as much as possible. I'll have to check out that > lotion that you recommeded - it might give her some relief. Poor baby - her legs > are so scarred already. Although Jake doesn't have a big outbreak of it I did > notice a few small patches when he was little.....Hannah's was the same way - it > started with two patches on her cheeks that they thought was a fungus.....like > everything else we had to go to several different doctors before we got the > diagnosis of eczema....hmmmmmm......makes you wonder! > > I don't know about the food allergies. She doesn't eat much as it is and its > a fight to get her to eat - I wonder if she is allergic to some things refusing > to eat it is her way of her body telling her not to? I guess I'll have to try a > few things. > > Her dialy routine consists of cereal/strawberry milk > sandwich or chicken nuggets > fruit/crackers/or snack > chicken nuggest/corn/bread/spaghetti > > What are some things that are in those foods that I should try to eliminate? > > Again - thanks! > > Nina Glazer nina525@...> wrote: > Sara, I just found a bunch of info on Autoimmune Inner > Ear Disease (AIED) when I googled for " autoimmune > hearing " . Does Hannah have excema by any chance? > That is caused by a compromised immune system and > often improves by adding flax and borage oil to one's > diet. > > I developed excema on my hands after my C-section; > it's common to get it after surgery since your immune > system becomes compromised. I suffered with it for 10 > months and then I discovered a lotion with borage oil > that people said " cured " excema. After 3-4 weeks my > excema was gone. I recommended the lotion to another > ovusofter who'd had excema on her face for five years. > She said that it cleared up and went away after a > month of using the lotion. Obviously you can't put > lotion in your DD's ears, but if she is suffering from > an autoimmune disorder then perhaps borage and flax > oil supplements would help? Nordic Naturals sells a > chewable fish oil supplement with borage oil in it but > it says for ages 5 and up: > https://www.nordicnaturals.com/direct/prodsummary.asp?ID=54 > They also have the pro-EFA liquid that we've been > giving to DS: > https://www.nordicnaturals.com/direct/prodsummary.asp?ID=50 > (we put it in his milk and then use one of those $5 > formula mixers to blend the oil into the milk so it's > not in big clumps). > > Speaking of milk, I wonder Hannah has a milk allergy > or a wheat allergy that could be making the autoimmune > disorder worse? I've read about that. I suspect that > my son, Jack, would benefit from a casein-free diet so > I'm looking into that. He does like goat's milk, > which I believe is nearly casein-free. > > I hope you get to the bottom of this. And thank you > for pointing me to this group!!!! > > Nina > > > --- saraandchadd saraandchadd@...> wrote: > > >> My audi said this is one thing they will test for. >> Does anyone have >> anymore info on this? She said there are a ton. I >> have never heard of >> an autoimmune disease that affects hearing so please >> fill me in. >> >> Do you think this could be in the " blood work " that >> her origianl ENT >> did when we found out Hannah was HOH? I go tomorrow >> to get a copy of >> that paperwork to see exactly what was tested - the >> tests >> were " normal " according to the ENT. >> >> >> >> >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2006 Report Share Posted May 16, 2006 I was pretty sick once during my pregnancy with Sydney ... would I have definitely known I had CMV? What are the symptoms? Thanks, Robin > > I just wanted to introduce myself. My son is 19 months old and wears > hearing aids in both ears. Initially, his left tested mild mod and his > right mod severe. Since then, the tests are coming back more even in the > mod to mod sev. He has been wearing the aids since around 2 months of > age. We have not had an accurate hearing test in awhile due to constant > fluid in his ears. I am currently fighting with my ent for tubes, and > considering changing ent's. That is a whole other story. My son's hearing > loss stems from congentital CMV which I contracted while pregnant. He has > developmental delays in other areas as well, but is doing great. > > I am located in New York. > > Lynn > > Re: autoimmune disorders > > > Nina - thank you for that info!! Hannah actually havs very bad eczema!! I > have a > script for the steroids but since they have been linked to skin cancer > when used > in children I avoid them as much as possible. I'll have to check out that > > lotion that you recommeded - it might give her some relief. Poor baby - > her legs > are so scarred already. Although Jake doesn't have a big outbreak of it I > did > notice a few small patches when he was little.....Hannah's was the same > way - it > started with two patches on her cheeks that they thought was a > fungus.....like > everything else we had to go to several different doctors before we got > the > diagnosis of eczema....hmmmmmm......makes you wonder! > > I don't know about the food allergies. She doesn't eat much as it is > and its > a fight to get her to eat - I wonder if she is allergic to some things > refusing > to eat it is her way of her body telling her not to? I guess I'll have to > try a > few things. > > Her dialy routine consists of cereal/strawberry milk > sandwich or chicken nuggets > fruit/crackers/or snack > chicken nuggest/corn/bread/spaghetti > > What are some things that are in those foods that I should try to > eliminate? > > Again - thanks! > > Nina Glazer nina525@...> wrote: > Sara, I just found a bunch of info on Autoimmune Inner > Ear Disease (AIED) when I googled for " autoimmune > hearing " . Does Hannah have excema by any chance? > That is caused by a compromised immune system and > often improves by adding flax and borage oil to one's > diet. > > I developed excema on my hands after my C-section; > it's common to get it after surgery since your immune > system becomes compromised. I suffered with it for 10 > months and then I discovered a lotion with borage oil > that people said " cured " excema. After 3-4 weeks my > excema was gone. I recommended the lotion to another > ovusofter who'd had excema on her face for five years. > She said that it cleared up and went away after a > month of using the lotion. Obviously you can't put > lotion in your DD's ears, but if she is suffering from > an autoimmune disorder then perhaps borage and flax > oil supplements would help? Nordic Naturals sells a > chewable fish oil supplement with borage oil in it but > it says for ages 5 and up: > https://www.nordicnaturals.com/direct/prodsummary.asp?ID=54 > They also have the pro-EFA liquid that we've been > giving to DS: > https://www.nordicnaturals.com/direct/prodsummary.asp?ID=50 > (we put it in his milk and then use one of those $5 > formula mixers to blend the oil into the milk so it's > not in big clumps). > > Speaking of milk, I wonder Hannah has a milk allergy > or a wheat allergy that could be making the autoimmune > disorder worse? I've read about that. I suspect that > my son, Jack, would benefit from a casein-free diet so > I'm looking into that. He does like goat's milk, > which I believe is nearly casein-free. > > I hope you get to the bottom of this. And thank you > for pointing me to this group!!!! > > Nina > > > --- saraandchadd saraandchadd@...> wrote: > > > My audi said this is one thing they will test for. > > Does anyone have > > anymore info on this? She said there are a ton. I > > have never heard of > > an autoimmune disease that affects hearing so please > > fill me in. > > > > Do you think this could be in the " blood work " that > > her origianl ENT > > did when we found out Hannah was HOH? I go tomorrow > > to get a copy of > > that paperwork to see exactly what was tested - the > > tests > > were " normal " according to the ENT. > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2006 Report Share Posted May 16, 2006 CMV is one of those Virus's that are prevalent among kids, usually show up as a cold and only cause harm if you get it for the first time while you are pregnant (or I believe are getting/got a transplant). Most adults have already had it. The belief is that my older daughter prob brought it home from day care where it is spread through contact with bodily fluids. I didn't know I had contracted it, the only signs were something amiss on my 20 weeks sonogram (echogenic bowel) which actually corrected itself before he was born. For more info here is a website. _Click here: National Congenital CMV Disease Registry_ (http://www.bcm.edu/pedi/infect/cmv/cmvbroch.htm) Lynn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2006 Report Share Posted May 16, 2006 In a message dated 5/16/2006 5:57:08 P.M. Eastern Daylight Time, Barbara.T.Mellert@... writes: And then of course, we end up with two deaf kids in spite of Hugh (my hubby) sifting the litter so it obviously isn't related in my case! But don't tell him... And now that the kids are older and the cats are their pets -- and Ian is already deaf, it's his job to empty the kitty litter, LOL Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2006 Report Share Posted May 16, 2006 Jill - I am on Long Island. Noah has had EI since around 8 weeks. He gets a ton of services, but he is doing great with them. I also take him to the BOCES Infant program, so he is quite the busy little boy. I am glad I found this listserv. Lynn Re: Introduction In a message dated 5/16/2006 10:18:15 A.M. Eastern Daylight Time, Lk writes: I am currently fighting with my ent for tubes, and considering changing ent's. That is a whole other story. My son's hearing loss stems from congentital CMV which I contracted while pregnant. He has developmental delays in other areas as well, but is doing great. I am located in New York. Lynn, Welcome to the group! We are also in NY, in Dutchess County, north of NYC and right near the Hudson River. Where are you in NY. there are a few of us here, spread around the state. Have you been in touch with the Early Intervention people? Our son's hearing loss was discovered when he was about 7-years-old, so I have no experience with that, but many people here do. My sister's son was in a local EI program for speech delays and did quite well with it. If you are uncomfortable with your ENT, then go find another one and get a second opinion. We went through a few ENTs and audiologists before finding the people we liked and trusted. Plus, I happen to like getting second opinions. It's covered under most insurance plans, and in my opinion, the more information I can get, the better. Again, welcome to the group. It's a very supportive and informative place. Best -- Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2006 Report Share Posted May 16, 2006 So I could have had it and never known that's what it was, huh? I had so many colds and different mess when I was a kid, though--I probably had it long ago. I think most kids get it by age 2, right? I directed a daycare one year, and I think that's what I read. Robin > > CMV is one of those Virus's that are prevalent among kids, usually show > up > as a cold and only cause harm if you get it for the first time while you > are > pregnant (or I believe are getting/got a transplant). Most adults have > already had it. The belief is that my older daughter prob brought it > home from > day care where it is spread through contact with bodily fluids. I didn't > know > I had contracted it, the only signs were something amiss on my 20 weeks > sonogram (echogenic bowel) which actually corrected itself before he was > born. > > For more info here is a website. > > > _Click here: National Congenital CMV Disease Registry_ > (http://www.bcm.edu/pedi/infect/cmv/cmvbroch.htm) > > > Lynn > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2006 Report Share Posted May 16, 2006 One of the most common places to pick up CMV is from your family kitty. It's the only time ever my husband sifted the kitty litter! Hmmm - maybe I should have more kids?! Lk wrote: > CMV is one of those Virus's that are prevalent among kids, usually show up > as a cold and only cause harm if you get it for the first time while you are > pregnant (or I believe are getting/got a transplant). Most adults have > already had it. The belief is that my older daughter prob brought it home from > day care where it is spread through contact with bodily fluids. I didn't know > I had contracted it, the only signs were something amiss on my 20 weeks > sonogram (echogenic bowel) which actually corrected itself before he was born. > > For more info here is a website. > > > _Click here: National Congenital CMV Disease Registry_ > (http://www.bcm.edu/pedi/infect/cmv/cmvbroch.htm) > > > Lynn > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2006 Report Share Posted May 16, 2006 Wow, shame on kitties and their poop! My friend's cousin got toxoplasmosis while planting a few tomato bushes where cats had obviously done their business. Her son was born with many problems, deafness being one of them. RT > > One of the most common places to pick up CMV is from your family kitty. > It's the only time ever my husband sifted the kitty litter! Hmmm - > maybe I should have more kids?! > > > Lk wrote: > > CMV is one of those Virus's that are prevalent among kids, usually show > up > > as a cold and only cause harm if you get it for the first time while you > are > > pregnant (or I believe are getting/got a transplant). Most adults have > > > already had it. The belief is that my older daughter prob brought it > home from > > day care where it is spread through contact with bodily fluids. I > didn't know > > I had contracted it, the only signs were something amiss on my 20 weeks > > > sonogram (echogenic bowel) which actually corrected itself before he > was born. > > > > For more info here is a website. > > > > > > _Click here: National Congenital CMV Disease Registry_ > > (http://www.bcm.edu/pedi/infect/cmv/cmvbroch.htm) > > > > > > Lynn > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2006 Report Share Posted May 16, 2006 And then of course, we end up with two deaf kids in spite of Hugh (my hubby) sifting the litter so it obviously isn't related in my case! But don't tell him... Robin Tomlinson wrote: > Wow, shame on kitties and their poop! My friend's cousin got toxoplasmosis > while planting a few tomato bushes where cats had obviously done their > business. Her son was born with many problems, deafness being one of them. > > RT > > > > > > >> One of the most common places to pick up CMV is from your family kitty. >> It's the only time ever my husband sifted the kitty litter! Hmmm - >> maybe I should have more kids?! >> >> >> Lk wrote: >> >>> CMV is one of those Virus's that are prevalent among kids, usually show >>> >> up >> >>> as a cold and only cause harm if you get it for the first time while you >>> >> are >> >>> pregnant (or I believe are getting/got a transplant). Most adults have >>> >>> already had it. The belief is that my older daughter prob brought it >>> >> home from >> >>> day care where it is spread through contact with bodily fluids. I >>> >> didn't know >> >>> I had contracted it, the only signs were something amiss on my 20 weeks >>> >>> sonogram (echogenic bowel) which actually corrected itself before he >>> >> was born. >> >>> For more info here is a website. >>> >>> >>> _Click here: National Congenital CMV Disease Registry_ >>> (http://www.bcm.edu/pedi/infect/cmv/cmvbroch.htm) >>> >>> >>> Lynn >>> >>> >>> >>> >>> >>> >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2006 Report Share Posted May 16, 2006 And Robin - you're right - my brain must be extra-blonde today. It's toxoplasmosis that cats can get and transmit, not CMV. I'm going to log off and go knit now! :-) Barbara Barbara Mellert wrote: > And then of course, we end up with two deaf kids in spite of Hugh (my > hubby) sifting the litter so it obviously isn't related in my case! But > don't tell him... > > Robin Tomlinson wrote: > >> Wow, shame on kitties and their poop! My friend's cousin got toxoplasmosis >> while planting a few tomato bushes where cats had obviously done their >> business. Her son was born with many problems, deafness being one of them. >> >> RT >> >> >> >> >> >> >> >>> One of the most common places to pick up CMV is from your family kitty. >>> It's the only time ever my husband sifted the kitty litter! Hmmm - >>> maybe I should have more kids?! >>> >>> >>> Lk wrote: >>> >>> >>>> CMV is one of those Virus's that are prevalent among kids, usually show >>>> >>>> >>> up >>> >>> >>>> as a cold and only cause harm if you get it for the first time while you >>>> >>>> >>> are >>> >>> >>>> pregnant (or I believe are getting/got a transplant). Most adults have >>>> >>>> already had it. The belief is that my older daughter prob brought it >>>> >>>> >>> home from >>> >>> >>>> day care where it is spread through contact with bodily fluids. I >>>> >>>> >>> didn't know >>> >>> >>>> I had contracted it, the only signs were something amiss on my 20 weeks >>>> >>>> sonogram (echogenic bowel) which actually corrected itself before he >>>> >>>> >>> was born. >>> >>> >>>> For more info here is a website. >>>> >>>> >>>> _Click here: National Congenital CMV Disease Registry_ >>>> (http://www.bcm.edu/pedi/infect/cmv/cmvbroch.htm) >>>> >>>> >>>> Lynn >>>> >>>> >>>> >>>> >>>> >>>> >>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2006 Report Share Posted May 16, 2006 Hi Jill - it's *supposed* to work that way here but doesn't always... We have two boy kittens - Smudge and Oreo - heaven forbid we have another female in the house! Barbara JillcWood@... wrote: > > In a message dated 5/16/2006 5:57:08 P.M. Eastern Daylight Time, > Barbara.T.Mellert@... writes: > > And then of course, we end up with two deaf kids in spite of Hugh (my > hubby) sifting the litter so it obviously isn't related in my case! But > don't tell him... > > > > > > And now that the kids are older and the cats are their pets -- and Ian is > already deaf, it's his job to empty the kitty litter, LOL > > Jill > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2006 Report Share Posted May 16, 2006 Hi Lynn, Welcome to the group. My son is 5 months and have been aided for about a month now. He is mod/sev in both ears. I usually lurk around, but find a lot of great information. I also live in NY, Long Island. Marni --- Lk wrote: > I just wanted to introduce myself. My son is 19 > months old and wears hearing aids in both ears. > Initially, his left tested mild mod and his right > mod severe. Since then, the tests are coming back > more even in the mod to mod sev. He has been > wearing the aids since around 2 months of age. We > have not had an accurate hearing test in awhile due > to constant fluid in his ears. I am currently > fighting with my ent for tubes, and considering > changing ent's. That is a whole other story. My > son's hearing loss stems from congentital CMV which > I contracted while pregnant. He has developmental > delays in other areas as well, but is doing great. > > I am located in New York. > > Lynn __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2006 Report Share Posted May 16, 2006 Hi Lynn, I am in East Meadow, and use an ENT in LIJ, Dr Vambutas. We actually just saw her today for . I like her a lot. We looked at BOCES for the infant program, but decided to go with Mill Neck's infant program instead. Welcome again Marni --- Lk wrote: > Jill - I am on Long Island. Noah has had EI since > around 8 weeks. He gets a ton of services, but he > is doing great with them. I also take him to the > BOCES Infant program, so he is quite the busy little > boy. > > I am glad I found this listserv. > > Lynn > > Re: Introduction > > > > In a message dated 5/16/2006 10:18:15 A.M. Eastern > Daylight Time, > Lk writes: > > I am currently fighting with my ent for tubes, and > considering changing > ent's. That is a whole other story. My son's > hearing loss stems from > congentital CMV which I contracted while pregnant. > He has developmental delays > in > other areas as well, but is doing great. > > I am located in New York. > > > > > > Lynn, > > Welcome to the group! We are also in NY, in > Dutchess County, north of NYC > and right near the Hudson River. Where are you in > NY. there are a few of us > here, spread around the state. > > Have you been in touch with the Early Intervention > people? Our son's hearing > loss was discovered when he was about 7-years-old, > so I have no experience > with that, but many people here do. My sister's son > was in a local EI program > for speech delays and did quite well with it. > > > If you are uncomfortable with your ENT, then go find > another one and get a > second opinion. We went through a few ENTs and > audiologists before finding the > people we liked and trusted. Plus, I happen to like > getting second opinions. > It's covered under most insurance plans, and in my > opinion, the more > information I can get, the better. > > Again, welcome to the group. It's a very supportive > and informative place. > > Best -- Jill > > > > > > > [Non-text portions of this message have been > removed] > > > > > 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 May 16, 2006 Report Share Posted May 16, 2006 Marni- Where on Long Island are you? I am in Plainview. If you are in Nassau, are you bringing him to the BOCES infant hearing program? Also, if you don't mind me asking do you have an ENT that you like? I need to change and have been trying to find one that I feel comfortable with their knowledge of hearing aids with children. Lynn Re: Introduction Hi Lynn, Welcome to the group. My son is 5 months and have been aided for about a month now. He is mod/sev in both ears. I usually lurk around, but find a lot of great information. I also live in NY, Long Island. Marni --- Lk wrote: > I just wanted to introduce myself. My son is 19 > months old and wears hearing aids in both ears. > Initially, his left tested mild mod and his right > mod severe. Since then, the tests are coming back > more even in the mod to mod sev. He has been > wearing the aids since around 2 months of age. We > have not had an accurate hearing test in awhile due > to constant fluid in his ears. I am currently > fighting with my ent for tubes, and considering > changing ent's. That is a whole other story. My > son's hearing loss stems from congentital CMV which > I contracted while pregnant. He has developmental > delays in other areas as well, but is doing great. > > I am located in New York. > > Lynn __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2006 Report Share Posted May 16, 2006 Sorry, I read your email and responded and just saw your last one. I looked at Mill Neck as well, are you happy their. When I looked at it they were not excepting new babies. Plus Noah receives so much EI services, plus I have a 3 year old that I did not think I could fit in the drive their. BOCES is 10 minutes and it makes all the difference. Re: Introduction > > > > In a message dated 5/16/2006 10:18:15 A.M. Eastern > Daylight Time, > Lk writes: > > I am currently fighting with my ent for tubes, and > considering changing > ent's. That is a whole other story. My son's > hearing loss stems from > congentital CMV which I contracted while pregnant. > He has developmental delays > in > other areas as well, but is doing great. > > I am located in New York. > > > > > > Lynn, > > Welcome to the group! We are also in NY, in > Dutchess County, north of NYC > and right near the Hudson River. Where are you in > NY. there are a few of us > here, spread around the state. > > Have you been in touch with the Early Intervention > people? Our son's hearing > loss was discovered when he was about 7-years-old, > so I have no experience > with that, but many people here do. My sister's son > was in a local EI program > for speech delays and did quite well with it. > > > If you are uncomfortable with your ENT, then go find > another one and get a > second opinion. We went through a few ENTs and > audiologists before finding the > people we liked and trusted. Plus, I happen to like > getting second opinions. > It's covered under most insurance plans, and in my > opinion, the more > information I can get, the better. > > Again, welcome to the group. It's a very supportive > and informative place. > > Best -- Jill > > > > > > > [Non-text portions of this message have been > removed] > > > > > 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 May 16, 2006 Report Share Posted May 16, 2006 I really like Mill Neck. It was a tough decision for me between BOCES and Mill Neck. BOCES is 10 minutes and Mill Neck is 20 mintues (in a rush). They are great there, they are great with my 2 year old hearing daugther as well. She is always with me and usually awake (or wakes up) while we are there. They let her play with the toys and gives her project to do there. They have also test hearing twice, they test every 2 weeks. The other services I get are 1 hour a week with a teacher from Mill neck in the house and 45 mintues a week with a TOD from EI. I love our TOD. What agency are you using from EI? I am using Childrens speech and rehab therapist (or something like that). I have had 2 appointments with our ENT and I have no complaints about her. The first was basically looking over he was only 2 months old at the time and checking him for genetic markers that might be associated with hearing loss. She did check his ears and saw that everything seem normal. She sent us for genetic testing which determined that was the cause of his hearing loss (Conecix 26). Today she reviewed a hearing test report from Mill Neck and checked his ears again. She seems very knowledgable with hearing loss and very approachable. I would recommend her in a heartbeat, Dr Vambutas at LIJ. I can give you hear number offline if you want. Where in Plainview are you? I have a lot of family that lives there and I go to 's Farm all the time. Marni --- Lk wrote: > Sorry, I read your email and responded and just saw > your last one. I looked at Mill Neck as well, are > you happy their. When I looked at it they were not > excepting new babies. Plus Noah receives so much EI > services, plus I have a 3 year old that I did not > think I could fit in the drive their. BOCES is 10 > minutes and it makes all the difference. > > Re: Introduction > > > > > > > > In a message dated 5/16/2006 10:18:15 A.M. Eastern > > Daylight Time, > > Lk writes: > > > > I am currently fighting with my ent for tubes, > and > > considering changing > > ent's. That is a whole other story. My son's > > hearing loss stems from > > congentital CMV which I contracted while pregnant. > > > He has developmental delays > > in > > other areas as well, but is doing great. > > > > I am located in New York. > > > > > > > > > > > > Lynn, > > > > Welcome to the group! We are also in NY, in > > Dutchess County, north of NYC > > and right near the Hudson River. Where are you in > > NY. there are a few of us > > here, spread around the state. > > > > Have you been in touch with the Early Intervention > > people? Our son's hearing > > loss was discovered when he was about 7-years-old, > > so I have no experience > > with that, but many people here do. My sister's > son > > was in a local EI program > > for speech delays and did quite well with it. > > > > > > If you are uncomfortable with your ENT, then go > find > > another one and get a > > second opinion. We went through a few ENTs and > > audiologists before finding the > > people we liked and trusted. Plus, I happen to > like > > getting second opinions. > > It's covered under most insurance plans, and in my > > opinion, the more > > information I can get, the better. > > > > Again, welcome to the group. It's a very > supportive > > and informative place. > > > > Best -- Jill > > > > > > > > > > > > > > [Non-text portions of this message have been > > removed] > > > > > > > > > > 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 May 17, 2006 Report Share Posted May 17, 2006 > I also take him to the BOCES Infant program, so he is quite the >busy little boy. > > I am glad I found this listserv. > > Lynn Hi Lynn - It's ('s mom) - Glad to see you found your way to this list - I'm surprised you only just heard about it, becuase it was BOCES that gave me the heads up about it..... Anyway - glad to see your here. - Mom of Miri - 7 1/2 - hearing Abigail - 5 - hearing - 2 - mild/mod SNHL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2006 Report Share Posted May 17, 2006 > Also, if you don't mind me asking do you have an ENT that you like? I need to change and have been trying to find one that I feel comfortable with their knowledge of hearing aids with children. > > Lynn > Lynn - I use Dr. Eliot Goldofsky - located in Great Neck - I really like him, and he's staying on top of . So far, we haven't really had any issues (thank god), but it's nice knowing he's there keeping track of us. Quote Link to comment Share on other sites More sharing options...
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