Guest guest Posted December 15, 2004 Report Share Posted December 15, 2004 My son Liam (SGA possible RSS) is Hearing impaired... I do not know if there is a connection or not. I do have a resource that helps with hearing aids for children under 16. It is Miracle Ear Children's Foundation Mom to Jed (1/22/93) and Liam (12/12/00) Orlando Fl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2004 Report Share Posted December 15, 2004 Hi, My son is hearing impaired and is a patient of " Family Conversations " from Children's hospital in Seattle. They have allot of free resources available as well as a signing coach that comes to our house once a week. I'm not sure where you live but, it might be worth checking your local childrens hospital to see if they have a similiar program. Kind Regards, Saundra Mom to Braeden(RSS) and Delaney 26 month twins Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2004 Report Share Posted December 15, 2004 <<My son is hearing impaired >> Is he your RSS child?? Now I am curious to see how many RSS/SGA kids are hearing impaired.. Can I set up a poll??? Mom to Jed (1/22/93) and Liam (12/12/00) Orlando Fl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2004 Report Share Posted December 15, 2004 It is so interesting that this subject came up. A new friend of mine has a son with Ring 15. It is a condition that " mimics " RSS..he has all the facial features and everything and when I was explaining about RSS she said aren't a majority of RSS kids hearing impaired? That was the first time I ever heard that. It's not in any of the brochures or on NORD. I would assume that if it was another characteristic Dr. H would include it in her brochures or it would be documented in genetics info?? Mimi (Mom to Isaac RSS, Hypothyroidism, 11 mos approx. 24 5/8 " 13 lbs) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2004 Report Share Posted December 15, 2004 Dr. H. has commented for a few years on this topic. I don't know if she has said anything publicly, like in her lectures, but she has commented at her examining tables at the convention. It is interesting that there are a number of RSS kids with hearing loss to some degree. Even Max has some in his left ear, although not enough to treat yet. I cannot remember what Dr. H. said about it, but I do know she is aware. I'm sure Salem would have more to say about this. Jodi Z Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2004 Report Share Posted December 17, 2004 My parents were told when I was diagnosed that hearing loss was a possibility, but neither of my parents ever remember the doctors providing an explanation for this. I also wanted to add that there was a news story out maybe six months to a year ago about how shorter adults in general (although I don't think the study qualified between " typically " short and " atypically short) seem to be at a higher risk for hearing loss. I wish I could remember more details, but I'm not sure that I read any of the articles that I saw. Does anyone else remember this? ~Hillary 22, RSS Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2004 Report Share Posted December 17, 2004 Hi its kim t, i had hearing loss as a child, i used to lipread and my dad was the only one who realised i was deaf as i wuld always look at peoples lips rather than their eyes and wouldn't agknowledge anyone if they called me and i wasn't facing them, i don't know if it was related to rss back then but i had several sets of gromits(tubes) inserted over the years and my hearing is a1 now. Hillary nsen wrote:My parents were told when I was diagnosed that hearing loss was a possibility, but neither of my parents ever remember the doctors providing an explanation for this. I also wanted to add that there was a news story out maybe six months to a year ago about how shorter adults in general (although I don't think the study qualified between " typically " short and " atypically short) seem to be at a higher risk for hearing loss. I wish I could remember more details, but I'm not sure that I read any of the articles that I saw. Does anyone else remember this? ~Hillary 22, RSS Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2004 Report Share Posted December 17, 2004 <<Hi its kim t, i had hearing loss as a child, i used to lipread and my dad was the only one who realised i was deaf as i wuld always look at peoples lips rather than their eyes and wouldn't agknowledge anyone if they called me and i wasn't facing them, i don't know if it was related to rss back then but i had several sets of gromits(tubes) inserted over the years and my hearing is a1 now.>> Liam is having tubes on Wednesday to see if that helps with his hearing. They said it may help totally, or he may still need hearing aids.... Mom to Jed (1/22/93) and Liam (12/12/00) Orlando Fl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2005 Report Share Posted January 9, 2005 Hi Marcy Happy belated birthday to na!! How was her birthday? B Marcy Conley wrote: Hello, na will be 4 January 5th. She is 26.5 lbs and 33.68 inches ( i hope more we go on the 4th) She was at 22lbs forever it seemed. Since birth she was feed by syringe the first months then bottle, we changed her fomula every few months because or reflux. They told me her dad was small she would be but everytime we went to the doctors they would say when she turns 4 we need to look at taking out the tonsils because they are enlarged. I thought could that be why daughter gags and would not but anything near her mouth. finally one of the doctors in the practice sent us to see Dr. Cunningham. We had to wait 3-4 months to see him then when we did he took xrays blood and said these need to come out, so i figured we would have to wait another 4 months but with in a week they were out. He had her on an Iv the whole time so incase she did have RS her levels would be fine. he talked to her. I can not say enough for this man, he explained everthing in details what would happen held my hand called the house to see how she was doing. I know there are many good doctors and many bad like the one that told me don't worry she will just be small then on her second birthday say i think some thing is wrong here...... Briggs wrote: Hi Marcy, You know since we were supposed to do that and didn't because of her heart surgery she has not been back to the ENT and in fact he has now retired. So I know have to get her file from him and the next ear infection I'm requesting she gets a referral for a new ENT and at that point hopefully they will be able to see about her adnoids. When she was 4 months old the ENT had to have her x-rayed because she was so small he couldn't see. How old is na? The ENT only recommed have her adnoids out and tubes in, nothing with her tonsils. B 4 3/4 RSS and Kelli 2 NON RSS --- Marcy Conley wrote: > > Hello, > , > Did the ENT check her adnoids again? na doctor > kept telling us she will grow into them and then we > will take them out. After she had her adnoids, > tonsils out she actually will try to eat more than > before. the ENT was unbelievable to her. He said if > I came sooner he would of taken them out before she > learn to eat so she would eat better. Her ear > infections have slowed down too. > > Briggs wrote: > > Hi, > > had a hearing test done and it had shown that > she has a very slight hearing loss on the right side > and none on the left. The test was done because she > was having re-current ear infections and it was > about the sixth one in a row (from 1/04 - 6/04 she > had one every month). At the time we had no idea of > RSS. We just knew she was small for her age. Her ENT > from the first time he saw her at 4 months old was > asking if her peds were aware of how small she was > and I told him yes they are. She was originally seen > at 4 months for snoring, and it turned out after an > x-ray, that she has enlarged adnoids and the ENT > wanted to wait to see if she " grew into them. " After > all the ear infections her ENT had the hearing test > performed and with the results we were getting ready > to schedule her to have tubes but that's when we > found out about the hole in her heart. > > So not sure if my post helps because it appears her > slight hearing loss was from ear infections and OH > YEAH the test was done while she was on the > antibiotic but the person conducting the study (I > forget her title) said that she had been on the > antibiotic long enough that her still being treated > for the ear infection had anything to do with the > results. > > B > > > kim taylor wrote: > Hi its kim t, i had hearing loss as a child, i used > to lipread and my dad was the only one who realised > i was deaf as i wuld always look at peoples lips > rather than their eyes and wouldn't agknowledge > anyone if they called me and i wasn't facing them, i > don't know if it was related to rss back then but i > had several sets of gromits(tubes) inserted over the > years and my hearing is a1 now. > > Hillary nsen wrote:My parents were told when I > was diagnosed that hearing loss was a possibility, > but neither of my parents ever remember the doctors > providing an explanation > for this. I also wanted to add that there was a news > story out maybe six > months to a year ago about how shorter adults in > general (although I don't > think the study qualified between " typically " short > and " atypically short) seem > to be at a higher risk for hearing loss. I wish I > could remember more details, > but I'm not sure that I read any of the articles > that I saw. Does anyone else > remember this? > > ~Hillary > 22, RSS > > Quote Link to comment Share on other sites More sharing options...
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