Guest guest Posted January 4, 2004 Report Share Posted January 4, 2004 Good luck with the tests May had the SVF done in nov she did well with it. she was alittle afraid of the xray equipment cause it was a little noisy and they put her very close to it , kindof close her in but i was able to stay withh the whole time and talk her through it. they were not able to do the vne cause they cant pass through her nasal passage. she is now going to have her choanal atresia repair ad a pheringal flap done. how old is Aubrie? again good luck cris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2004 Report Share Posted January 5, 2004 hi Michele this also sounds familiar from my time on the cleft boards ... if you need further info, maybe you could look there? ... from what i remember parents saying their children often did surprisingly well ... hth Jo ds Ben, ds Josh CHaRGE uclbcp ----- Original Message ----- > VNE-- video nasal endoscopy -- After anesthetic nasal spray, they will insert a scope and observe the action in her nose/throat as she speaks. > > SVF -- speech video flouroscopy -- With barium fluid sprayed up her nose, they will xray/video tape the activity as she speaks. > > The trick is that Aubrie has to be awake, alert, and cooperative through it all. I could not imagine how they would get a kid to cooperate with cameras and fluid up her nose. But we got the little coloring book that they send to prep the child. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2004 Report Share Posted January 5, 2004 , What an impressive and positive preparation for these upcoming procedures! You are to be so commended. :-) What kinds of options will be available following the tests? Will the test results suggest possible surgical options, or will different oral motor and speech therapy protocols be suggested? Or are there other options I am not aware of? Very best of luck to your young video star - in the pink leopard print dress-up jacket and boa. Too bad you can't make a video to help prepare other chargers in the future for these kinds of tests!! Mom to Kendra, and Camille testing...1...2...3 Aubrie goes for some testing on Tues. I think that I mentioned it about a year ago when it was first suggested to us. She had a speech eval at St Louis Children's Hospital to address hypernasality and other issues. Good news was that our school SLP was on track and doing the right things. Bad news was that the testing required to move any further is quite invasive. Here's what we're doing: VNE-- video nasal endoscopy -- After anesthetic nasal spray, they will insert a scope and observe the action in her nose/throat as she speaks. SVF -- speech video flouroscopy -- With barium fluid sprayed up her nose, they will xray/video tape the activity as she speaks. The trick is that Aubrie has to be awake, alert, and cooperative through it all. I could not imagine how they would get a kid to cooperate with cameras and fluid up her nose. But we got the little coloring book that they send to prep the child. Aubrie is looking forward to visiting the special TV station at SLCH -- KNOZ-TV. There, her nose will be the star of the show! She's already met the SLP and seen herself saying words on TV during the initial eval last year. So she gets the idea that Lynn will help her practice her words on TV first. Then we'll meet the NOZ-TV doctor who will squirt the special medicine in her nose. She likes her ENT and expects to like this special TV doctor too. We've done nose spray in the recent past and she's fine with that. We practiced with some saline spray tonight and she was fine. Then they will put the tiny camera in her nose and she'll say the words she practiced. She can watch the action on the TV. When she's done, she'll get a prize from the prize drawer, of course. So far, she's buying the whole thing. We're going to bring her favorite pink leopard print dress up jacket, her feather boa, and fancy dress up shoes to play the superstar role. If she cooperates, this will be fascinating to watch. Hopefully, the information will help us decide what to do next to get her speech more intelligible. There was no prep coloring book for the SVF. We'll do the first test in the am and the second one after lunch. I suppose we get through the first successfully before we deal with the second. Then we can talk about it and prepare over lunch. So... wish us luck. I'll let you all know how it goes after the fact. If anyone has been through this, please share your experience. Michele W Aubrie's mom (6 yrs) CHaRgE and (12 yrs) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2004 Report Share Posted January 5, 2004 I can't take credit for the prep. I was still quite pessimistic about the possibility of Aubrie tolerating the procedure -- until we got the little coloring book. Then it all began to click. There are both surgical and prosthetic options that might help depending on the test results. I have actually thought about bringing my digital camera and recording the event for others. Question will be if I can get all my memory cleared and battery charged by tomorrow... then observe it myself through the camera rather than devoting my full attention to the superstar :-) Michele testing...1...2...3 Aubrie goes for some testing on Tues. I think that I mentioned it about a year ago when it was first suggested to us. She had a speech eval at St Louis Children's Hospital to address hypernasality and other issues. Good news was that our school SLP was on track and doing the right things. Bad news was that the testing required to move any further is quite invasive. Here's what we're doing: VNE-- video nasal endoscopy -- After anesthetic nasal spray, they will insert a scope and observe the action in her nose/throat as she speaks. SVF -- speech video flouroscopy -- With barium fluid sprayed up her nose, they will xray/video tape the activity as she speaks. The trick is that Aubrie has to be awake, alert, and cooperative through it all. I could not imagine how they would get a kid to cooperate with cameras and fluid up her nose. But we got the little coloring book that they send to prep the child. Aubrie is looking forward to visiting the special TV station at SLCH -- KNOZ-TV. There, her nose will be the star of the show! She's already met the SLP and seen herself saying words on TV during the initial eval last year. So she gets the idea that Lynn will help her practice her words on TV first. Then we'll meet the NOZ-TV doctor who will squirt the special medicine in her nose. She likes her ENT and expects to like this special TV doctor too. We've done nose spray in the recent past and she's fine with that. We practiced with some saline spray tonight and she was fine. Then they will put the tiny camera in her nose and she'll say the words she practiced. She can watch the action on the TV. When she's done, she'll get a prize from the prize drawer, of course. So far, she's buying the whole thing. We're going to bring her favorite pink leopard print dress up jacket, her feather boa, and fancy dress up shoes to play the superstar role. If she cooperates, this will be fascinating to watch. Hopefully, the information will help us decide what to do next to get her speech more intelligible. There was no prep coloring book for the SVF. We'll do the first test in the am and the second one after lunch. I suppose we get through the first successfully before we deal with the second. Then we can talk about it and prepare over lunch. So... wish us luck. I'll let you all know how it goes after the fact. If anyone has been through this, please share your experience. Michele W Aubrie's mom (6 yrs) CHaRgE and (12 yrs) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2004 Report Share Posted January 5, 2004 I had never considered that -- but will try to find time to get there today. Thanks for the tip! Re: testing...1...2...3 hi Michele this also sounds familiar from my time on the cleft boards ... if you need further info, maybe you could look there? ... from what i remember parents saying their children often did surprisingly well ... hth Jo ds Ben, ds Josh CHaRGE uclbcp ----- Original Message ----- > VNE-- video nasal endoscopy -- After anesthetic nasal spray, they will insert a scope and observe the action in her nose/throat as she speaks. > > SVF -- speech video flouroscopy -- With barium fluid sprayed up her nose, they will xray/video tape the activity as she speaks. > > The trick is that Aubrie has to be awake, alert, and cooperative through it all. I could not imagine how they would get a kid to cooperate with cameras and fluid up her nose. But we got the little coloring book that they send to prep the child. Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter) please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org 7th International CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2004 Report Share Posted January 5, 2004 It's so encouraging to know someone else who has successfully done this! Aubrie is 6 yrs old. Michele Re: testing...1...2...3 Good luck with the tests May had the SVF done in nov she did well with it. she was alittle afraid of the xray equipment cause it was a little noisy and they put her very close to it , kindof close her in but i was able to stay withh the whole time and talk her through it. they were not able to do the vne cause they cant pass through her nasal passage. she is now going to have her choanal atresia repair ad a pheringal flap done. how old is Aubrie? again good luck cris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2004 Report Share Posted January 5, 2004 Again-- it's good to know someone else who has done this. Aubrie can be cooperative as well... as long as she is not hurt or frightened. Proceeding carefully will be critical. I can imagine how anatomical differences could make the test difficult -- but I guess that's what we're trying to find out. I am hoping for some quality info. Michele testing...1...2...3 >Aubrie goes for some testing on Tues. I think that I mentioned it about a year ago when it was first suggested to us. She had a speech eval at St Louis Children's Hospital to address hypernasality and other issues. Good news was that our school SLP was on track and doing the right things. Bad news was that the testing required to move any further is quite invasive. Here's what we're doing: > >VNE-- video nasal endoscopy -- After anesthetic nasal spray, they will insert a scope and observe the action in her nose/throat as she speaks. > >SVF -- speech video flouroscopy -- With barium fluid sprayed up her nose, they will xray/video tape the activity as she speaks. > >The trick is that Aubrie has to be awake, alert, and cooperative through it all. I could not imagine how they would get a kid to cooperate with cameras and fluid up her nose. But we got the little coloring book that they send to prep the child. > >Aubrie is looking forward to visiting the special TV station at SLCH -- KNOZ-TV. There, her nose will be the star of the show! She's already met the SLP and seen herself saying words on TV during the initial eval last year. So she gets the idea that Lynn will help her practice her words on TV first. Then we'll meet the NOZ-TV doctor who will squirt the special medicine in her nose. She likes her ENT and expects to like this special TV doctor too. We've done nose spray in the recent past and she's fine with that. We practiced with some saline spray tonight and she was fine. Then they will put the tiny camera in her nose and she'll say the words she practiced. She can watch the action on the TV. When she's done, she'll get a prize from the prize drawer, of course. > >So far, she's buying the whole thing. We're going to bring her favorite pink leopard print dress up jacket, her feather boa, and fancy dress up shoes to play the superstar role. If she cooperates, this will be fascinating to watch. Hopefully, the information will help us decide what to do next to get her speech more intelligible. > >There was no prep coloring book for the SVF. We'll do the first test in the am and the second one after lunch. I suppose we get through the first successfully before we deal with the second. Then we can talk about it and prepare over lunch. > >So... wish us luck. I'll let you all know how it goes after the fact. If anyone has been through this, please share your experience. > >Michele W >Aubrie's mom (6 yrs) CHaRgE and (12 yrs) > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2004 Report Share Posted January 5, 2004 Michele, good luck with the test, thankfully, we have not had this done--I don't see something like this test going well with Timmy. But, I hope your little one does well --and has fun dressing up--good idea. testing...1...2...3 > Aubrie goes for some testing on Tues. I think that I mentioned it about a year ago when it was first suggested to us. She had a speech eval at St Louis Children's Hospital to address hypernasality and other issues. Good news was that our school SLP was on track and doing the right things. Bad news was that the testing required to move any further is quite invasive. Here's what we're doing: > > VNE-- video nasal endoscopy -- After anesthetic nasal spray, they will insert a scope and observe the action in her nose/throat as she speaks. > > SVF -- speech video flouroscopy -- With barium fluid sprayed up her nose, they will xray/video tape the activity as she speaks. > > The trick is that Aubrie has to be awake, alert, and cooperative through it all. I could not imagine how they would get a kid to cooperate with cameras and fluid up her nose. But we got the little coloring book that they send to prep the child. > > Aubrie is looking forward to visiting the special TV station at SLCH -- KNOZ-TV. There, her nose will be the star of the show! She's already met the SLP and seen herself saying words on TV during the initial eval last year. So she gets the idea that Lynn will help her practice her words on TV first. Then we'll meet the NOZ-TV doctor who will squirt the special medicine in her nose. She likes her ENT and expects to like this special TV doctor too. We've done nose spray in the recent past and she's fine with that. We practiced with some saline spray tonight and she was fine. Then they will put the tiny camera in her nose and she'll say the words she practiced. She can watch the action on the TV. When she's done, she'll get a prize from the prize drawer, of course. > > So far, she's buying the whole thing. We're going to bring her favorite pink leopard print dress up jacket, her feather boa, and fancy dress up shoes to play the superstar role. If she cooperates, this will be fascinating to watch. Hopefully, the information will help us decide what to do next to get her speech more intelligible. > > There was no prep coloring book for the SVF. We'll do the first test in the am and the second one after lunch. I suppose we get through the first successfully before we deal with the second. Then we can talk about it and prepare over lunch. > > So... wish us luck. I'll let you all know how it goes after the fact. If anyone has been through this, please share your experience. > > Michele W > Aubrie's mom (6 yrs) CHaRgE and (12 yrs) > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2004 Report Share Posted January 5, 2004 , Karlee had the VNE done this fall. Karlee is pretty cooperative - and of course she is old enough to understand this has to be done. There was a problem with the instrument with the camera getting in the correct position. Due to the anantomy of the back of her throat they couldn't get instrument back far enough. I think this should not have been uncomfortable, but it ended up to be a little painful. (It wasn't the worst thing she has ever had done) Maybe it will go better for Aubrie - I hope. It sounds like she will have a lot of fun getting ready for it! from IL (Karlee almost 16) testing...1...2...3 >Aubrie goes for some testing on Tues. I think that I mentioned it about a year ago when it was first suggested to us. She had a speech eval at St Louis Children's Hospital to address hypernasality and other issues. Good news was that our school SLP was on track and doing the right things. Bad news was that the testing required to move any further is quite invasive. Here's what we're doing: > >VNE-- video nasal endoscopy -- After anesthetic nasal spray, they will insert a scope and observe the action in her nose/throat as she speaks. > >SVF -- speech video flouroscopy -- With barium fluid sprayed up her nose, they will xray/video tape the activity as she speaks. > >The trick is that Aubrie has to be awake, alert, and cooperative through it all. I could not imagine how they would get a kid to cooperate with cameras and fluid up her nose. But we got the little coloring book that they send to prep the child. > >Aubrie is looking forward to visiting the special TV station at SLCH -- KNOZ-TV. There, her nose will be the star of the show! She's already met the SLP and seen herself saying words on TV during the initial eval last year. So she gets the idea that Lynn will help her practice her words on TV first. Then we'll meet the NOZ-TV doctor who will squirt the special medicine in her nose. She likes her ENT and expects to like this special TV doctor too. We've done nose spray in the recent past and she's fine with that. We practiced with some saline spray tonight and she was fine. Then they will put the tiny camera in her nose and she'll say the words she practiced. She can watch the action on the TV. When she's done, she'll get a prize from the prize drawer, of course. > >So far, she's buying the whole thing. We're going to bring her favorite pink leopard print dress up jacket, her feather boa, and fancy dress up shoes to play the superstar role. If she cooperates, this will be fascinating to watch. Hopefully, the information will help us decide what to do next to get her speech more intelligible. > >There was no prep coloring book for the SVF. We'll do the first test in the am and the second one after lunch. I suppose we get through the first successfully before we deal with the second. Then we can talk about it and prepare over lunch. > >So... wish us luck. I'll let you all know how it goes after the fact. If anyone has been through this, please share your experience. > >Michele W >Aubrie's mom (6 yrs) CHaRgE and (12 yrs) > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2004 Report Share Posted January 5, 2004 Hi MIchelle, As an adult ( I do not have CHARGE, but rheumatoid arthritis) I had both of those procedures. They do not hurt, but can be a bit uncomfortable. It is quick (relatively speaking) and the insertion of the tubes and the taking out of the tubes is quick. Good luck. It sounds like you are really prepared and have a done a good job getting your superstar ready. pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2004 Report Share Posted January 5, 2004 Thanks for sharing your experience. This is off CHARGE, but my mom is having strange sensations (or loss of sensation) in her face and has begun having difficulty swallowing. Docs have found no reason for this. We've ruled out MS, stroke, tumor... Does rheumatoid arthiritis effect swallowing? Just wondering if it could be related... Michele W RE: testing...1...2...3 Hi MIchelle, As an adult ( I do not have CHARGE, but rheumatoid arthritis) I had both of those procedures. They do not hurt, but can be a bit uncomfortable. It is quick (relatively speaking) and the insertion of the tubes and the taking out of the tubes is quick. Good luck. It sounds like you are really prepared and have a done a good job getting your superstar ready. pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2004 Report Share Posted January 5, 2004 Thanks for sharing your experience. This is off CHARGE, but my mom is having strange sensations (or loss of sensation) in her face and has begun having difficulty swallowing. Docs have found no reason for this. We've ruled out MS, stroke, tumor... Does rheumatoid arthiritis effect swallowing? Just wondering if it could be related... Michele W RE: testing...1...2...3 Hi MIchelle, As an adult ( I do not have CHARGE, but rheumatoid arthritis) I had both of those procedures. They do not hurt, but can be a bit uncomfortable. It is quick (relatively speaking) and the insertion of the tubes and the taking out of the tubes is quick. Good luck. It sounds like you are really prepared and have a done a good job getting your superstar ready. pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2004 Report Share Posted January 5, 2004 , I underwent this testing because my voice had changed dramatically(very Vaccarro, the husky-voiced actress) and I was having some trouble with swallowing some things. Nothing hurt, but my throat felt strained and " odd " . My Rheumatologist was convinced that both were part of " rheumatoid flares " and as I began tracking my voice changes, I could correlate with other joint problems. The ENT, however, was convinced I had reflux (despite having NO symptoms) and put me on meds. Currently, I am not having any problems and all is back to normal and probably related to my medications kicking in all they way. That's my story! My recommendation would be to have her see a rheumatologist to rule out things and it couldn't hurt to see an ENT to rule out severe reflux which can cause swallowing problems (as you know!) but also can lead to more serious conditions of the esophagus. pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2004 Report Share Posted January 5, 2004 , I underwent this testing because my voice had changed dramatically(very Vaccarro, the husky-voiced actress) and I was having some trouble with swallowing some things. Nothing hurt, but my throat felt strained and " odd " . My Rheumatologist was convinced that both were part of " rheumatoid flares " and as I began tracking my voice changes, I could correlate with other joint problems. The ENT, however, was convinced I had reflux (despite having NO symptoms) and put me on meds. Currently, I am not having any problems and all is back to normal and probably related to my medications kicking in all they way. That's my story! My recommendation would be to have her see a rheumatologist to rule out things and it couldn't hurt to see an ENT to rule out severe reflux which can cause swallowing problems (as you know!) but also can lead to more serious conditions of the esophagus. pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2004 Report Share Posted January 5, 2004 Thanks for the information. Her symptoms are very strange and we've had a hard time finding any help. She's in a bit of denial at the moment so I'll hold your recommendations for the time when she's ready to pursue things again. Michele RE: testing...1...2...3 , I underwent this testing because my voice had changed dramatically(very Vaccarro, the husky-voiced actress) and I was having some trouble with swallowing some things. Nothing hurt, but my throat felt strained and " odd " . My Rheumatologist was convinced that both were part of " rheumatoid flares " and as I began tracking my voice changes, I could correlate with other joint problems. The ENT, however, was convinced I had reflux (despite having NO symptoms) and put me on meds. Currently, I am not having any problems and all is back to normal and probably related to my medications kicking in all they way. That's my story! My recommendation would be to have her see a rheumatologist to rule out things and it couldn't hurt to see an ENT to rule out severe reflux which can cause swallowing problems (as you know!) but also can lead to more serious conditions of the esophagus. pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2004 Report Share Posted January 5, 2004 Thanks for the information. Her symptoms are very strange and we've had a hard time finding any help. She's in a bit of denial at the moment so I'll hold your recommendations for the time when she's ready to pursue things again. Michele RE: testing...1...2...3 , I underwent this testing because my voice had changed dramatically(very Vaccarro, the husky-voiced actress) and I was having some trouble with swallowing some things. Nothing hurt, but my throat felt strained and " odd " . My Rheumatologist was convinced that both were part of " rheumatoid flares " and as I began tracking my voice changes, I could correlate with other joint problems. The ENT, however, was convinced I had reflux (despite having NO symptoms) and put me on meds. Currently, I am not having any problems and all is back to normal and probably related to my medications kicking in all they way. That's my story! My recommendation would be to have her see a rheumatologist to rule out things and it couldn't hurt to see an ENT to rule out severe reflux which can cause swallowing problems (as you know!) but also can lead to more serious conditions of the esophagus. pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2004 Report Share Posted January 6, 2004 Michele, We've nnot been through it but I'll be anxious to hear about how she does. When is it? Weir Mom to Kennedy 5 1/2 yr old with CHARGE, 14, 12 and wife to Graeme. New Brunswick, Canada Weir homepage: http://personal.nbnet.nb.ca/gweir CHARGE SYNDROME CANADA: http://www.chargesyndrome.ca testing...1...2...3 Aubrie goes for some testing on Tues. I think that I mentioned it about a year ago when it was first suggested to us. She had a speech eval at St Louis Children's Hospital to address hypernasality and other issues. Good news was that our school SLP was on track and doing the right things. Bad news was that the testing required to move any further is quite invasive. Here's what we're doing: VNE-- video nasal endoscopy -- After anesthetic nasal spray, they will insert a scope and observe the action in her nose/throat as she speaks. SVF -- speech video flouroscopy -- With barium fluid sprayed up her nose, they will xray/video tape the activity as she speaks. The trick is that Aubrie has to be awake, alert, and cooperative through it all. I could not imagine how they would get a kid to cooperate with cameras and fluid up her nose. But we got the little coloring book that they send to prep the child. Aubrie is looking forward to visiting the special TV station at SLCH -- KNOZ-TV. There, her nose will be the star of the show! She's already met the SLP and seen herself saying words on TV during the initial eval last year. So she gets the idea that Lynn will help her practice her words on TV first. Then we'll meet the NOZ-TV doctor who will squirt the special medicine in her nose. She likes her ENT and expects to like this special TV doctor too. We've done nose spray in the recent past and she's fine with that. We practiced with some saline spray tonight and she was fine. Then they will put the tiny camera in her nose and she'll say the words she practiced. She can watch the action on the TV. When she's done, she'll get a prize from the prize drawer, of course. So far, she's buying the whole thing. We're going to bring her favorite pink leopard print dress up jacket, her feather boa, and fancy dress up shoes to play the superstar role. If she cooperates, this will be fascinating to watch. Hopefully, the information will help us decide what to do next to get her speech more intelligible. There was no prep coloring book for the SVF. We'll do the first test in the am and the second one after lunch. I suppose we get through the first successfully before we deal with the second. Then we can talk about it and prepare over lunch. So... wish us luck. I'll let you all know how it goes after the fact. If anyone has been through this, please share your experience. Michele W Aubrie's mom (6 yrs) CHaRgE and (12 yrs) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2004 Report Share Posted January 6, 2004 Well- the testing was supposed to be today but the SLP is home with a sick child so we are rescheduled on Jan 27. We were all geared up for it. Today, our elementary school is out because of a faulty furnace so it would've been perfect to be out to the doc on a day when everybody missed school. But then, is home feeling sick too so that would've been a problem. There just no counting on anything in Jan in IL. Either it's illness, subzero temps, or snow and ice. Last week we were in the 40's and 50's -- now it's subzero, brittle, and frozen outside. It's a bit of a wonderland really -- I've never seen the sun shine on the icy trees like they are now :-) I'll certainly let you all know how it goes after we finally have the testing. Michele W testing...1...2...3 Aubrie goes for some testing on Tues. I think that I mentioned it about a year ago when it was first suggested to us. She had a speech eval at St Louis Children's Hospital to address hypernasality and other issues. Good news was that our school SLP was on track and doing the right things. Bad news was that the testing required to move any further is quite invasive. Here's what we're doing: VNE-- video nasal endoscopy -- After anesthetic nasal spray, they will insert a scope and observe the action in her nose/throat as she speaks. SVF -- speech video flouroscopy -- With barium fluid sprayed up her nose, they will xray/video tape the activity as she speaks. The trick is that Aubrie has to be awake, alert, and cooperative through it all. I could not imagine how they would get a kid to cooperate with cameras and fluid up her nose. But we got the little coloring book that they send to prep the child. Aubrie is looking forward to visiting the special TV station at SLCH -- KNOZ-TV. There, her nose will be the star of the show! She's already met the SLP and seen herself saying words on TV during the initial eval last year. So she gets the idea that Lynn will help her practice her words on TV first. Then we'll meet the NOZ-TV doctor who will squirt the special medicine in her nose. She likes her ENT and expects to like this special TV doctor too. We've done nose spray in the recent past and she's fine with that. We practiced with some saline spray tonight and she was fine. Then they will put the tiny camera in her nose and she'll say the words she practiced. She can watch the action on the TV. When she's done, she'll get a prize from the prize drawer, of course. So far, she's buying the whole thing. We're going to bring her favorite pink leopard print dress up jacket, her feather boa, and fancy dress up shoes to play the superstar role. If she cooperates, this will be fascinating to watch. Hopefully, the information will help us decide what to do next to get her speech more intelligible. There was no prep coloring book for the SVF. We'll do the first test in the am and the second one after lunch. I suppose we get through the first successfully before we deal with the second. Then we can talk about it and prepare over lunch. So... wish us luck. I'll let you all know how it goes after the fact. If anyone has been through this, please share your experience. Michele W Aubrie's mom (6 yrs) CHaRgE and (12 yrs) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2004 Report Share Posted January 7, 2004 Come live in North East Ohio, Sunny ice trees are common Lynn testing...1...2...3 Aubrie goes for some testing on Tues. I think that I mentioned it about a year ago when it was first suggested to us. She had a speech eval at St Louis Children's Hospital to address hypernasality and other issues. Good news was that our school SLP was on track and doing the right things. Bad news was that the testing required to move any further is quite invasive. Here's what we're doing: VNE-- video nasal endoscopy -- After anesthetic nasal spray, they will insert a scope and observe the action in her nose/throat as she speaks. SVF -- speech video flouroscopy -- With barium fluid sprayed up her nose, they will xray/video tape the activity as she speaks. The trick is that Aubrie has to be awake, alert, and cooperative through it all. I could not imagine how they would get a kid to cooperate with cameras and fluid up her nose. But we got the little coloring book that they send to prep the child. Aubrie is looking forward to visiting the special TV station at SLCH -- KNOZ-TV. There, her nose will be the star of the show! She's already met the SLP and seen herself saying words on TV during the initial eval last year. So she gets the idea that Lynn will help her practice her words on TV first. Then we'll meet the NOZ-TV doctor who will squirt the special medicine in her nose. She likes her ENT and expects to like this special TV doctor too. We've done nose spray in the recent past and she's fine with that. We practiced with some saline spray tonight and she was fine. Then they will put the tiny camera in her nose and she'll say the words she practiced. She can watch the action on the TV. When she's done, she'll get a prize from the prize drawer, of course. So far, she's buying the whole thing. We're going to bring her favorite pink leopard print dress up jacket, her feather boa, and fancy dress up shoes to play the superstar role. If she cooperates, this will be fascinating to watch. Hopefully, the information will help us decide what to do next to get her speech more intelligible. There was no prep coloring book for the SVF. We'll do the first test in the am and the second one after lunch. I suppose we get through the first successfully before we deal with the second. Then we can talk about it and prepare over lunch. So... wish us luck. I'll let you all know how it goes after the fact. If anyone has been through this, please share your experience. Michele W Aubrie's mom (6 yrs) CHaRgE and (12 yrs) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2004 Report Share Posted January 7, 2004 Come live in North East Ohio, Sunny ice trees are common Lynn testing...1...2...3 Aubrie goes for some testing on Tues. I think that I mentioned it about a year ago when it was first suggested to us. She had a speech eval at St Louis Children's Hospital to address hypernasality and other issues. Good news was that our school SLP was on track and doing the right things. Bad news was that the testing required to move any further is quite invasive. Here's what we're doing: VNE-- video nasal endoscopy -- After anesthetic nasal spray, they will insert a scope and observe the action in her nose/throat as she speaks. SVF -- speech video flouroscopy -- With barium fluid sprayed up her nose, they will xray/video tape the activity as she speaks. The trick is that Aubrie has to be awake, alert, and cooperative through it all. I could not imagine how they would get a kid to cooperate with cameras and fluid up her nose. But we got the little coloring book that they send to prep the child. Aubrie is looking forward to visiting the special TV station at SLCH -- KNOZ-TV. There, her nose will be the star of the show! She's already met the SLP and seen herself saying words on TV during the initial eval last year. So she gets the idea that Lynn will help her practice her words on TV first. Then we'll meet the NOZ-TV doctor who will squirt the special medicine in her nose. She likes her ENT and expects to like this special TV doctor too. We've done nose spray in the recent past and she's fine with that. We practiced with some saline spray tonight and she was fine. Then they will put the tiny camera in her nose and she'll say the words she practiced. She can watch the action on the TV. When she's done, she'll get a prize from the prize drawer, of course. So far, she's buying the whole thing. We're going to bring her favorite pink leopard print dress up jacket, her feather boa, and fancy dress up shoes to play the superstar role. If she cooperates, this will be fascinating to watch. Hopefully, the information will help us decide what to do next to get her speech more intelligible. There was no prep coloring book for the SVF. We'll do the first test in the am and the second one after lunch. I suppose we get through the first successfully before we deal with the second. Then we can talk about it and prepare over lunch. So... wish us luck. I'll let you all know how it goes after the fact. If anyone has been through this, please share your experience. Michele W Aubrie's mom (6 yrs) CHaRgE and (12 yrs) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2004 Report Share Posted January 7, 2004 I was looking forward to enjoying them on our trip down to St Louis tomorrow -- 2 hours. The temps should be rising and the ice leaving later in the day. But DJ burst my bubble when he informed me that the ice is only in our county. Within a few minutes of leaving home, we'll be out of it :-( Michele testing...1...2...3 Aubrie goes for some testing on Tues. I think that I mentioned it about a year ago when it was first suggested to us. She had a speech eval at St Louis Children's Hospital to address hypernasality and other issues. Good news was that our school SLP was on track and doing the right things. Bad news was that the testing required to move any further is quite invasive. Here's what we're doing: VNE-- video nasal endoscopy -- After anesthetic nasal spray, they will insert a scope and observe the action in her nose/throat as she speaks. SVF -- speech video flouroscopy -- With barium fluid sprayed up her nose, they will xray/video tape the activity as she speaks. The trick is that Aubrie has to be awake, alert, and cooperative through it all. I could not imagine how they would get a kid to cooperate with cameras and fluid up her nose. But we got the little coloring book that they send to prep the child. Aubrie is looking forward to visiting the special TV station at SLCH -- KNOZ-TV. There, her nose will be the star of the show! She's already met the SLP and seen herself saying words on TV during the initial eval last year. So she gets the idea that Lynn will help her practice her words on TV first. Then we'll meet the NOZ-TV doctor who will squirt the special medicine in her nose. She likes her ENT and expects to like this special TV doctor too. We've done nose spray in the recent past and she's fine with that. We practiced with some saline spray tonight and she was fine. Then they will put the tiny camera in her nose and she'll say the words she practiced. She can watch the action on the TV. When she's done, she'll get a prize from the prize drawer, of course. So far, she's buying the whole thing. We're going to bring her favorite pink leopard print dress up jacket, her feather boa, and fancy dress up shoes to play the superstar role. If she cooperates, this will be fascinating to watch. Hopefully, the information will help us decide what to do next to get her speech more intelligible. There was no prep coloring book for the SVF. We'll do the first test in the am and the second one after lunch. I suppose we get through the first successfully before we deal with the second. Then we can talk about it and prepare over lunch. So... wish us luck. I'll let you all know how it goes after the fact. If anyone has been through this, please share your experience. Michele W Aubrie's mom (6 yrs) CHaRgE and (12 yrs) Quote Link to comment Share on other sites More sharing options...
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