Guest guest Posted February 9, 2004 Report Share Posted February 9, 2004 Hi Diane - welcome! I learn so much from everyone here - I hope you will too. take care Barbara --- You wrote: I recently found this message board. I hope that you don't mind > me joining. --- end of quote --- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2004 Report Share Posted February 9, 2004 Hi! I recently found this message board. I hope that you don't mind me joining. My youngest daughter, , has bilateral sensory-neural hearing loss as well as many other medical/developmental issues that are part of a very rare genetic disease. is 9 ½ yo and is in a self-contained classroom at school. She currently wears digital Phonak hearing aids and uses an auditory trainers at times during the school day. is non-verbal but does make choices by touch. We believe that she is able to understand much more than she is able to express. I'm glad that we found this board. I'll post my question in a separate post. Thank You! Diane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2004 Report Share Posted February 9, 2004 Diane, Welcome to the list. I'm and my 11 year old Hayley has a CI and goes to school in Simi Valley, CA. >> _________________________________________________________________ Choose now from 4 levels of MSN Hotmail Extra Storage - no more account overload! http://click.atdmt.com/AVE/go/onm00200362ave/direct/01/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2004 Report Share Posted February 9, 2004 Diane, Welcome. Your message caught my eye because I have a daughter who is almost 8 with a FG syndrome. She is also developmentally delayed and is schooled in a Special Day Class setting. She has a cochlear implant. does talk and sign but she is definitely speech and language delayed. also understands much more then she can express. I will look forward to your future posts, it sounds like we have some things in common. Jeane New member introduction Hi! I recently found this message board. I hope that you don't mind me joining. My youngest daughter, , has bilateral sensory-neural hearing loss as well as many other medical/developmental issues that are part of a very rare genetic disease. is 9 ½ yo and is in a self-contained classroom at school. She currently wears digital Phonak hearing aids and uses an auditory trainers at times during the school day. is non-verbal but does make choices by touch. We believe that she is able to understand much more than she is able to express. I'm glad that we found this board. I'll post my question in a separate post. Thank You! Diane All messages posted to this list are private and confidential. Each post is the intellectual property of the author and therefore subject to copyright restrictions. ------------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2004 Report Share Posted February 10, 2004 Have you ever heard the term auditory neuropathy? Usually with this type of hearing loss the audiogram can have anywhere from normal to severely abnormal results usually fluctuating. The ABR shows severely delayed response or absent response. The thing is it is a problem with the timing of the sound getting to the brain, it is severely delayed and in some cases it doesn't get there. Now she may very well be able to hear the sound but it is delayed which causes distortion which often makes it incomprehensable. So while she may be able to hear the sound she doesn't understand it because of the distortion factor. I know it is confusing that she can hear the sound even thought he ABR shows she can't all that means is that her latencies are so delayed it's not showing up on the test. This is significant in that it doesn't really matter if you can hear something if what is being heard is so distorted you can't make any sense out of it. With this type of hearing loss they tend to have good moments or days and bad moments or days, when sometimes they can hear well and other times they can't. So one day she may respond to her name and then the next not even turn to the sound of a whistle. I hope this makes sense. It really isn't the test it is the type of loss. I would find someone who is very educated (a professional) on AN and ask them about it. I know there is a website support group for children with AN I think Elaine is the one who runs that they may be able to help you. Dr. Berlin is the leading expert in the field in the US, you may be able to get his e-mail address and ask if he would be willing to look at her test results. If you don't have them I would get a copy always in case you want a second opinion. If you can scan them into your computer you could send them that way or just ask if you could fax or send it in the mail. That would be my suggestion since you are talking about delayed latencies and things I would guess AN which sounds a lot like what you are talking about. New member introduction Quote Link to comment Share on other sites More sharing options...
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