Guest guest Posted August 9, 2005 Report Share Posted August 9, 2005 Ellen, If there were a medical school in close proximity that's where I would be...but alas, there isn't so I'm doing the degrees I'm doing for now! ellen howe wrote: your the best you should be a doctor charge to lol ellen > > I say it's worth a try for the bone conduction aid; I can't tell you how > much it has benefitted Kennedy...if it doesn't work, then go back and try > something else, but it's definitely worth a try and the people at Entific > are AWESOME... > > > Joannelent@... wrote: > Very interesting. Eddie (5) has not been happy about his hearing aids for > the > past 3 1/2 years. Keeping the aids out whenever he has ear infections > doesn't > help either. He seems to understand us in quiet settings, which makes me > think he doesn't " know " that the hearing aids help him. Eddie has a > sensorineural > loss (mild/moderate right ear, severe left ear) ... or so we thought. Jim > Thelin did a quick test on Eddie at the conference and believes he may > have some > conductive loss as well. It looks like he's not the only one. > > Joanne Lent > Edison, NJ > > > Hi a I had to comment on your son and his hearing aids, my son also > > hated his hearing aids and would only wear them in school and the > > audiologist would be not to happy that I was not forcing him to wear > > them at home. Now we see a different audio. who took interest into why > > he is not wanting to wear his aids and changed to a bone conduction > > hearing aid and he benefits from this even though he also has a > > sensineural loss too. It does not bother all his ear infections which > > are numerous and we have checked out a BAHA implant now (Bone conduction > > implant) and then some where down the road we may also go back to a > > hearing aid and a BAHA. He started to say words now and understands > > conversations with out signning to him it is amazing! He is now 11. > > Just food for thought. Kim/Michigan > > > > Hello new member > > > > > > Hi n, > > Welcome this list is great everyone here is very > > empathetic and caring it is a great support. My son is > > 7 almost 8. He did not have cleft lip/palet but he did > > and still does have some of the other issues you are > > facing. He has had cronic ear infections which have > > been treated with ear tubes. He had a nissen > > fundoplication to help with the reflux/vomiting it > > failed 3 times at one point he had a g-j tube. He is > > on prevacid and has had his nissen intact for 5 years. > > This is a hard surgery but for my son it was life > > saving. He hates to wear his hearing aids and will > > only wear them at school. I don't think he gets much > > from them. When he was younger he did not like them > > because of all the ear infections the aids would make > > his ears hurt more. For communication we have tried > > many things what seems to work best for him is a > > combination of approaches he uses a picture schedule > > combined with sign language at school and at home we > > use sign. he is more recpitve than expressive. It does > > get easier and these little guyes are worth it. Just > > remember you have a family here who understands and > > are here for you just ask. > > a mom to 7 almost 8 yr CHARGEr and Quintin 5yr > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2005 Report Share Posted August 9, 2005 , What degrees are you studying for? Kim > Ellen, > If there were a medical school in close proximity that's where I would > be...but alas, there isn't so I'm doing the degrees I'm doing for now! > > > ellen howe wrote: > your the best you should be a doctor charge to lol ellen > > >> >> I say it's worth a try for the bone conduction aid; I can't tell you how >> much it has benefitted Kennedy...if it doesn't work, then go back and try >> something else, but it's definitely worth a try and the people at Entific >> are AWESOME... >> >> >> Joannelent@... wrote: >> Very interesting. Eddie (5) has not been happy about his hearing aids for >> the >> past 3 1/2 years. Keeping the aids out whenever he has ear infections >> doesn't >> help either. He seems to understand us in quiet settings, which makes me >> think he doesn't " know " that the hearing aids help him. Eddie has a >> sensorineural >> loss (mild/moderate right ear, severe left ear) ... or so we thought. Jim >> Thelin did a quick test on Eddie at the conference and believes he may >> have some >> conductive loss as well. It looks like he's not the only one. >> >> Joanne Lent >> Edison, NJ >> >>> Hi a I had to comment on your son and his hearing aids, my son also >>> hated his hearing aids and would only wear them in school and the >>> audiologist would be not to happy that I was not forcing him to wear >>> them at home. Now we see a different audio. who took interest into why >>> he is not wanting to wear his aids and changed to a bone conduction >>> hearing aid and he benefits from this even though he also has a >>> sensineural loss too. It does not bother all his ear infections which >>> are numerous and we have checked out a BAHA implant now (Bone conduction >>> implant) and then some where down the road we may also go back to a >>> hearing aid and a BAHA. He started to say words now and understands >>> conversations with out signning to him it is amazing! He is now 11. >>> Just food for thought. Kim/Michigan >>> >>> Hello new member >>> >>> >>> Hi n, >>> Welcome this list is great everyone here is very >>> empathetic and caring it is a great support. My son is >>> 7 almost 8. He did not have cleft lip/palet but he did >>> and still does have some of the other issues you are >>> facing. He has had cronic ear infections which have >>> been treated with ear tubes. He had a nissen >>> fundoplication to help with the reflux/vomiting it >>> failed 3 times at one point he had a g-j tube. He is >>> on prevacid and has had his nissen intact for 5 years. >>> This is a hard surgery but for my son it was life >>> saving. He hates to wear his hearing aids and will >>> only wear them at school. I don't think he gets much >>> from them. When he was younger he did not like them >>> because of all the ear infections the aids would make >>> his ears hurt more. For communication we have tried >>> many things what seems to work best for him is a >>> combination of approaches he uses a picture schedule >>> combined with sign language at school and at home we >>> use sign. he is more recpitve than expressive. It does >>> get easier and these little guyes are worth it. Just >>> remember you have a family here who understands and >>> are here for you just ask. >>> a mom to 7 almost 8 yr CHARGEr and Quintin 5yr >>> >>> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2005 Report Share Posted September 8, 2005 Does Devin have a feeding specialist who works with him? This person was key to the diagnosis of Dylan's problems with aspiration. She was the first person who really watched Dylan eat and was able to document the problems with the suck-swallow-breathe triad. We then ordered the video swallow study. If she hadn't been with during the video swallow study the radiologist would have declared it normal. The therapist was able to point out the number of times milk penetrated past the flap that separates the esophagus and trachea and how he did not cough or turn away from the bottle when this happened. The radiologist was only looking at the lung. I hate to say these things, because you have enough on your plate getting all the other tests done, but undiagnosed micro-aspirations can lead to symptoms of asthma and so on. On kidneys, Dylan only has one, but we have not had to deal with the reflux issue. Kim > Thank you for your input. Yes Devin is looking more like a CHARGEr > evreyday!! Thank you for asking about the other tests. His barium > swallow came back as nothing significant. He still chokes on his > bottles 90% of the tome so I am going to make my own assumption that > it has to do with the swallowing and breathing coordination??? He > still is smiling though and he has to have some more tests on his > kidneys so I will keep you posted!! Thanks for caring. Jaydeen, Devins > mom > > > > > > Membership of this email support groups does not constitute membership in the > CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org. For CHARGE Syndrome Canada > information and membership, please visit http://www.chargesyndrome.ca, or > email info@.... > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
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