Guest guest Posted May 6, 2000 Report Share Posted May 6, 2000 Hi Deedee, I have a friend who has a little boy who is profoundly deaf and had a cochlear implant when he was he was 2 years old , he hears nothing through the implant , infact his mum has stopped using it. They use sign language with him now, it didn't help that the doctors were trying a new sight for the implant ( maybe lower on the head) and the damned thing was always falling off, where ever they went they always had to hunt for it.(stressed everybody out no end) In hindsight his mum believes that he was not a good candidate for the surgery maybe problems with the auditory nerve or the wiring to the brain. He does not have Charge but has had problems with his digestive system (he has now been diagnosed with Celiac) and was once diagnosed with ADHD, although this has improved out of sight since Gluten was removed from his diet. He is 7 now and seems to be doing well at last. His problems have a lot of similarities to Charge. Jan Hewitson Mum to Belinda 18 and Larry 16 chaRGE Perth West Australia (no subject) > We have been so busy that I haven't written in a while, but I've had a hard > week and I thought it might help to get some input. On Monday, we had a > modified barium swallow test. His feeding team thought my 3 year old, Bryce > was going to do very well; he had made great improvements with accepting and > tasting foods. It seemed that he would swallow them without trouble (very > small bites). But he failed the test again. We were told that he didn't do > any better than he had 18 months ago. I was quite discouraged but then I > remembered that 18 months ago, I was suctioning him 100 times a day and now > we haven't suctioned him in 6 months at all. How could they say that his > swallow is not improving? I realize that they are only looking for aspiration > risk and he is still at risk but the words of no improvement really threw me > for a loop. I don't expect to be at the end of a journey, but I sure hope we > are traveling down the right road! Anyway, we will head to Cleveland in June > to join the ever growing Charge brigade in the electric stim study. Any > advice from previous Cleveland-goers? Did anyone take other siblings? What > did you do in your free time? I hear really good reports but I was curious > if the swallowing improvements continued over time. Did anyone regress after > leaving Cleveland? > > Then on Thursday, we went for a cochlear implant follow-up audiogram and > so far he is only hearing in the 60 db range with his implant. This is highly > unusual. They are almost always able to get kids to hear in the 25-35 db > range. They are beginning to think that either his auditory nerve is damaged > of there is a mechanical problem. Has anyone else been told that they have > auditory nerve damage. Apparently that is a very rare cause for deafness. We > are doing the auditory-verbal form of therapy but if we cannot get better > results from his implant, we need to switch methods soon. But for now we > continue to wait for answers. Sigh. > > Thanks for the space to ramble.... > > Deedee > > ------------------------------------------------------------------------ > You have a voice mail message waiting for you at iHello.com: > http://click./1/3555/2/_/22564/_/957582433/ > ------------------------------------------------------------------------ > > For information about the CHARGE Syndrome > Foundation or to become a member please > contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2000 Report Share Posted May 6, 2000 Deedee wrote: > But he failed the test again. We were told that he didn't do > any better than he had 18 months ago. I was quite discouraged but then I > remembered that 18 months ago, I was suctioning him 100 times a day and now > we haven't suctioned him in 6 months at all. How could they say that his > swallow is not improving? Deedee: One has to assume that he is swallowing better just by your " clinical " observations. One question I have - and the technicians just hated us! - how was the study accomplished? When they tried to test on her barium swallow study, they insisted on strapping her into a very straight chair. was still tactile defensive and just threw a fit each time. Of course a screaming, upset, crying child is going to aspirate! Later we requested that she be allowed to sit in a regular highchair, at a slight angle, and we took things that she had tasted - and liked - from home. (She loved spinach juice, of all things!) passed the swallow study that time, because she was not upset. And yes, they could follow the food bolus just fine without strapping her down and upsetting her. It helped that we had a nurse at the time that never took " No " for an answer! She went in with and said, " We WILL be using a highchair and we will NOT be strapping her down. Any questions? " The technicians and staff just stared with their mouths open, and shook their heads! It may take a while yet to pass the test, but if you are suctioning less, I'd say you are on your way. Especially since the feeding team was so encouraged by his practical experiences. We may have been incorrect to do so, but we gave just about anything she would tolerate, and we didn't had problems with aspiration. I think you and your team have a much better idea of what your son can tolerate than any test. There are some things you have to just jump into with good advice and common sense caution. Does Bryce enjoy food experiences? That was a real key for . She was actually asking to taste foods and became upset if we refused. Good luck - the feeding is probably one of the more frustrating things we all deal with, whether for size and nutrition (I.E: getting enough), or for just getting them to eat at all. Friends in CHARGE, Marilyn Ogan Mom of Ken (10) and (7 - CHARGE+), Wife of Rick Indianapolis, IN oganm@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2000 Report Share Posted May 7, 2000 Deedee, From what I have read about CHARGE, I thought the hearing loss in CHARGErs is often caused by crainal nerve "involvement", more the "C" for Cranial nerves than the "E" for ear malformations and/or deafness. I realize there can be a lot of other hearing loss reasons in CHARGE; conductive, mixed loss, etc but I think their cranial nerve "involvement" that can cause big problems for these guys as well. If you get a chance and you still have Jeanie Colp's number, you might wanna give her a call if you haven't talked to her lately. MacKenzie was implanted in March and the docs found some really freaky stuff going on with her nerves anatomically speaking while they were "in there". I'm sure she'd love to hear from you. Sorry to hear about the swallowing thing, we are there with you on that one. It's frustrating. Please keep us posted about how you make out in Cleveland. I am thinking about trying to find out if Medicare up here in Canada would pay for such a thing seeing that it isn't available anywhere else. Good luck with your trek to the elec. stim! Mom to Kennedy 2yr old CHARGEr, 10, 9, and wife to GraemeNew Brunswick, CanadaVisit the "Weir homepage" at: http://www.geocities.com/SunsetStrip/Palms/5716ICQ #1426476 (no subject)> We have been so busy that I haven't written in a while, but I've had ahard> week and I thought it might help to get some input. On Monday, we had a> modified barium swallow test. His feeding team thought my 3 year old,Bryce> was going to do very well; he had made great improvements with acceptingand> tasting foods. It seemed that he would swallow them without trouble (very> small bites). But he failed the test again. We were told that he didn't do> any better than he had 18 months ago. I was quite discouraged but then I> remembered that 18 months ago, I was suctioning him 100 times a day andnow> we haven't suctioned him in 6 months at all. How could they say that his> swallow is not improving? I realize that they are only looking foraspiration> risk and he is still at risk but the words of no improvement really threwme> for a loop. I don't expect to be at the end of a journey, but I sure hopewe> are traveling down the right road! Anyway, we will head to Cleveland inJune> to join the ever growing Charge brigade in the electric stim study. Any> advice from previous Cleveland-goers? Did anyone take other siblings? What> did you do in your free time? I hear really good reports but I wascurious> if the swallowing improvements continued over time. Did anyone regressafter> leaving Cleveland?>> Then on Thursday, we went for a cochlear implant follow-up audiogramand> so far he is only hearing in the 60 db range with his implant. This ishighly> unusual. They are almost always able to get kids to hear in the 25-35 db> range. They are beginning to think that either his auditory nerve isdamaged> of there is a mechanical problem. Has anyone else been told that they have> auditory nerve damage. Apparently that is a very rare cause for deafness.We> are doing the auditory-verbal form of therapy but if we cannot get better> results from his implant, we need to switch methods soon. But for now we> continue to wait for answers. Sigh.>> Thanks for the space to ramble....>> Deedee>> ------------------------------------------------------------------------> You have a voice mail message waiting for you at iHello.com:> http://click./1/3555/2/_/22564/_/957582433/> ------------------------------------------------------------------------>> For information about the CHARGE Syndrome> Foundation or to become a member please> contact marion@... or visit> the CHARGE Syndrome Foundation web page> at http://www.chargesyndrome.org For information about the CHARGE Syndrome Foundation or to become a member please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org Quote Link to comment Share on other sites More sharing options...
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