Guest guest Posted July 2, 1999 Report Share Posted July 2, 1999 Hi and everyone else, This wonderful ENT is Dr. Margaret Kenna and she works out of Children's Hospital. Lori wrote: > > > OH LORI, I can't believe this! I am so thrilled for ALycia and what a bunch > of creeps who have not helped her and how happy I am you found this person. > Wish I lived near you and I would go to her for sure! Maybe you should share > her name and infor on the list for anyone who does and wants to use her. > Keep us informed of Alycia's progress, I am very interested. I just can't > believe no one else would even clean out the wax or worse yet, check the > condition of the tubes!! S. > > Hearing loss > > > > > > >Hi, > > > >My daughter, Alycia saw the ENT to determine why she has a conductive > >hearing loss despite the lack of fluid or ear infections. One of the > >reasons, what a ton of wax in her ears that caused a cement-like > >plug. The wax formed around the ventilation tubes that had fallen out > >and into the ear canal. The ENT removed the wax (Alycia was a very > >brave little soldier through the entire process) and gave us drops to > >help float the tubes out. > > > >The difference in Alycia's hearing was instantaneously noticable! I > >swear that her articulation improved within seconds and suddenly she > >could hear the difference between similar sounds like B and D. She > >often repeats statements that you make to her for further > >clarification but in the past, she would repeat the words back > >slightly incorrectly but after the wax was out, the words were > >repeated back perfectly! She actually was able to hear the crickets > >last night! She hasn't been able to hear the crickets all spring....I > >wanted to cry, I was so happy. > > > >I am also a bit angry that it took this long for someone to deal with > >the ear wax problem. I had noticed wax leaking from her ear for > >almost a year and kept bringing her to the pediatrician to see about > >getting the wax cleaned out and he kept saying it wasn't necessary. > >The ENT that she was seeing was equally conservative. > > > >I switched to a new ENT because I could not have a civil conversation > >with the previous ENT plus I didn't like the rough manner in which he > >handled Alycia. This new doctor was a breath of fresh air. She > >acutally took the time to talk to me and ask how my daughter's > >hearing affected her school work and what sort of accomodation were > >being made. She noticed her thick chart and asked if she had an > >underlying condition so I told her about the mitochondrial disease and > >spinal fusion. (The previous ENT blew me off when I tried to explain > >her underlying condition..he said " I am not interested in that, I am > >only interested in her ears " . When I tried to explain that the > >underlying condition was the probable cause of the hearing loss, he > >tuned me right out.) The doctor also was very frank in telling me > >that despite the improvement in Alycia's hearing by removing the wax, > >she will continue to have hearing difficulty because of her underlying > >sensory loss and fluctuating pressure in her eustacian tubes. She > >said I should expect that Alycia will need either a hearing aid or an > >FM system for school. She will re-test Alycia's hearing in September > >(after the drops do their job) and then consider fitting her for these > >hearing devices. She said these are essential to her education and > >that I will probably see a great deal of her Auditory Processing > >difficulties improve. > > > >Finally, I found an ENT who looks at the whole child and the whole > >picture!!!!! > > > >Lori > > > >BTW, to those who offered advice for the team meeting, the meeting > >will be in July. I have taken all the information and " put it in my > >back pocket " in case I need it. Hopefully, the meeting will go well > >but I am prepared if it doesn't with much thanks to all of you who > >helped me. > > > > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 1999 Report Share Posted July 2, 1999 Lori, I am glad the news sounds so encouraging regarding your daughter's hearing. My had profound hearing loss the first year of life and WE KNEW it, but the ENT took his time doing the ear tube surgery. I guess all is well that ends well because when they did it, he had complications from anesthesia and had to be admitted. This was his 4th surgery by that point in time and we, the parents expected the complications, but it never becomes an old hat for your child to be profoundly bradycardic with cyanosis, respiratory arrest, and oxygen desaturations! I hope you get the official great news soon! Cheri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 1999 Report Share Posted July 2, 1999 OH LORI, I can't believe this! I am so thrilled for ALycia and what a bunch of creeps who have not helped her and how happy I am you found this person. Wish I lived near you and I would go to her for sure! Maybe you should share her name and infor on the list for anyone who does and wants to use her. Keep us informed of Alycia's progress, I am very interested. I just can't believe no one else would even clean out the wax or worse yet, check the condition of the tubes!! S. Hearing loss > > >Hi, > >My daughter, Alycia saw the ENT to determine why she has a conductive >hearing loss despite the lack of fluid or ear infections. One of the >reasons, what a ton of wax in her ears that caused a cement-like >plug. The wax formed around the ventilation tubes that had fallen out >and into the ear canal. The ENT removed the wax (Alycia was a very >brave little soldier through the entire process) and gave us drops to >help float the tubes out. > >The difference in Alycia's hearing was instantaneously noticable! I >swear that her articulation improved within seconds and suddenly she >could hear the difference between similar sounds like B and D. She >often repeats statements that you make to her for further >clarification but in the past, she would repeat the words back >slightly incorrectly but after the wax was out, the words were >repeated back perfectly! She actually was able to hear the crickets >last night! She hasn't been able to hear the crickets all spring....I >wanted to cry, I was so happy. > >I am also a bit angry that it took this long for someone to deal with >the ear wax problem. I had noticed wax leaking from her ear for >almost a year and kept bringing her to the pediatrician to see about >getting the wax cleaned out and he kept saying it wasn't necessary. >The ENT that she was seeing was equally conservative. > >I switched to a new ENT because I could not have a civil conversation >with the previous ENT plus I didn't like the rough manner in which he >handled Alycia. This new doctor was a breath of fresh air. She >acutally took the time to talk to me and ask how my daughter's >hearing affected her school work and what sort of accomodation were >being made. She noticed her thick chart and asked if she had an >underlying condition so I told her about the mitochondrial disease and >spinal fusion. (The previous ENT blew me off when I tried to explain >her underlying condition..he said " I am not interested in that, I am >only interested in her ears " . When I tried to explain that the >underlying condition was the probable cause of the hearing loss, he >tuned me right out.) The doctor also was very frank in telling me >that despite the improvement in Alycia's hearing by removing the wax, >she will continue to have hearing difficulty because of her underlying >sensory loss and fluctuating pressure in her eustacian tubes. She >said I should expect that Alycia will need either a hearing aid or an >FM system for school. She will re-test Alycia's hearing in September >(after the drops do their job) and then consider fitting her for these >hearing devices. She said these are essential to her education and >that I will probably see a great deal of her Auditory Processing >difficulties improve. > >Finally, I found an ENT who looks at the whole child and the whole >picture!!!!! > >Lori > >BTW, to those who offered advice for the team meeting, the meeting >will be in July. I have taken all the information and " put it in my >back pocket " in case I need it. Hopefully, the meeting will go well >but I am prepared if it doesn't with much thanks to all of you who >helped me. > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 1999 Report Share Posted July 2, 1999 OH LORI, I can't believe this! I am so thrilled for ALycia and what a bunch of creeps who have not helped her and how happy I am you found this person. Wish I lived near you and I would go to her for sure! Maybe you should share her name and infor on the list for anyone who does and wants to use her. Keep us informed of Alycia's progress, I am very interested. I just can't believe no one else would even clean out the wax or worse yet, check the condition of the tubes!! S. Hearing loss > > >Hi, > >My daughter, Alycia saw the ENT to determine why she has a conductive >hearing loss despite the lack of fluid or ear infections. One of the >reasons, what a ton of wax in her ears that caused a cement-like >plug. The wax formed around the ventilation tubes that had fallen out >and into the ear canal. The ENT removed the wax (Alycia was a very >brave little soldier through the entire process) and gave us drops to >help float the tubes out. > >The difference in Alycia's hearing was instantaneously noticable! I >swear that her articulation improved within seconds and suddenly she >could hear the difference between similar sounds like B and D. She >often repeats statements that you make to her for further >clarification but in the past, she would repeat the words back >slightly incorrectly but after the wax was out, the words were >repeated back perfectly! She actually was able to hear the crickets >last night! She hasn't been able to hear the crickets all spring....I >wanted to cry, I was so happy. > >I am also a bit angry that it took this long for someone to deal with >the ear wax problem. I had noticed wax leaking from her ear for >almost a year and kept bringing her to the pediatrician to see about >getting the wax cleaned out and he kept saying it wasn't necessary. >The ENT that she was seeing was equally conservative. > >I switched to a new ENT because I could not have a civil conversation >with the previous ENT plus I didn't like the rough manner in which he >handled Alycia. This new doctor was a breath of fresh air. She >acutally took the time to talk to me and ask how my daughter's >hearing affected her school work and what sort of accomodation were >being made. She noticed her thick chart and asked if she had an >underlying condition so I told her about the mitochondrial disease and >spinal fusion. (The previous ENT blew me off when I tried to explain >her underlying condition..he said " I am not interested in that, I am >only interested in her ears " . When I tried to explain that the >underlying condition was the probable cause of the hearing loss, he >tuned me right out.) The doctor also was very frank in telling me >that despite the improvement in Alycia's hearing by removing the wax, >she will continue to have hearing difficulty because of her underlying >sensory loss and fluctuating pressure in her eustacian tubes. She >said I should expect that Alycia will need either a hearing aid or an >FM system for school. She will re-test Alycia's hearing in September >(after the drops do their job) and then consider fitting her for these >hearing devices. She said these are essential to her education and >that I will probably see a great deal of her Auditory Processing >difficulties improve. > >Finally, I found an ENT who looks at the whole child and the whole >picture!!!!! > >Lori > >BTW, to those who offered advice for the team meeting, the meeting >will be in July. I have taken all the information and " put it in my >back pocket " in case I need it. Hopefully, the meeting will go well >but I am prepared if it doesn't with much thanks to all of you who >helped me. > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
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