Re: ENT appointment tomorrow

[Guest guest]

>

> reluctant to give him anything including tests since he is so " boarderline " .

What I dont' understand is how he is clearly in the mild-moderate range for

children. For children mild range is 15-30 or in some cases 20-40 depending on

who you see, is at 30 dB at 4000 HZ I am sure that his loss is more

significant if you go up higher but everyone wants to ignore that and say it is

central and nothing will help him and dismiss him from there.

The mild-moderate designation is based on only three of the sound frequencies

(500 Hz, 1000 Hz, and 2000 Hz) on the audiogram, not all of them, and it's the

measurement for the better ear.

Barbara Handley

http://www.deafhomeschool.com

[Guest guest]

>

> reluctant to give him anything including tests since he is so " boarderline " .

What I dont' understand is how he is clearly in the mild-moderate range for

children. For children mild range is 15-30 or in some cases 20-40 depending on

who you see, is at 30 dB at 4000 HZ I am sure that his loss is more

significant if you go up higher but everyone wants to ignore that and say it is

central and nothing will help him and dismiss him from there.

The mild-moderate designation is based on only three of the sound frequencies

(500 Hz, 1000 Hz, and 2000 Hz) on the audiogram, not all of them, and it's the

measurement for the better ear.

Barbara Handley

http://www.deafhomeschool.com

[Guest guest]

,

You've been through so much and I really don't have all the answers for you.

But I feel like you present very strong arguments in your last night's email

to get the Dr. to order assistive technology for , and also to suggest

education for him in a hoh/deaf school.

Here's what I think, because my pediatrician used to like us to do this. If

we really wanted him to " write " a letter, he asked US to write it, and he

would read it and sign it. But it gave him a starting-off point and he

didn't have to invest any extra time in it. So write up this letter and

bring it to your appointment today and ask (really really nicely), if he

would help you with the school system and health care folks by signing the

letter.

I think you will achieve less success with arguing for the extra abr up to

8000 hZ-- it will be difficult for them to come up with this and I think

you'll get pushback because ordering the test costs money and is a pain for

them to schedule.

And ultimately, the test result isn't as important as getting him the

education and training he needs.

I feel like your descriptions of how is desperately trying to hear at

home and your successes using sign, etc are much more effective for

persuading someone to see your side. It seems

clear that how hears in TESTS is no furthering your argument at all.

So focus on how much success he's had with sign language, etc., and how

LITTLE success he's had with teaching methods used for kids with a central

loss.

Really, I think if you take last night's email and pare it down to 2-3

paragraphs or so, it will be an effective and powerful document for your

son.

So good luck, and tell us how it goes.

Daphne Potter

> ENT appointment tomorrow

>

>

> Anyone still up? I would like some help. Every time we see an

> audiologist or ENT I get nervous because they tend to like to

> ignore that has a mild loss because his symptoms are that a

> profound loss and that doesn't add up in their book, so instead

> of looking at the fact that his latencies are severely delayed

> which would explain his severe symptoms even with a mild loss,

> they prefer to ignore the loss and say it is central and leave it

> at that, even though there are things they could do like order an

> FM system or something for that. I need to explain to them why I

> don't think it is central as they seem to think. My reasoning is

> that is paying attention to sounds now, he is trying to

> repeate songs and sounds, the problem is he mainly only gets the

> vowel sounds unless he is looking at us at which point he

> attempts b's and d's and things. Sometimes he will make an m

> sound. My point is that if he had a central loss would he really

> be responding to some sounds and n!

> ot others? Not from what I have heard. They conveniently ignore

> the fact that he doesn't have an OAE on one side in the high

> frequencies which supports the high frequency hearing loss the

> ABR picked up on, only the loss the ABR picked up on was far less

> severe than a missing OAE would suggest which is why I want them

> to test up to 8000 HZ on ABR. My doctor was going to order one

> but when the nurse called the local hospital to do so they told

> her they only go to 4000 HZ. I don't know if this is something

> that is a policy or if it is equipment limitations, in which case

> I would want to be sent to Phoenix. I have to somehow convince

> this ENT to do a tone burst ABR up to 8000 HZ. The missing OAE

> is only missing at 6000 HZ and up I believe which tells me that

> his loss is more severe in the higher than 4000 HZ range and his

> loss isn't as boarderline as they think. I need to convince him

> that regardless of what they think we need this higher frequency

> loss ruled out or identif!

> ied in order to get him proper services at school. They are very

> reluctant to give him anything including tests since he is so

> " boarderline " . What I dont' understand is how he is clearly in

> the mild-moderate range for children. For children mild range is

> 15-30 or in some cases 20-40 depending on who you see, is at

> 30 dB at 4000 HZ I am sure that his loss is more significant if

> you go up higher but everyone wants to ignore that and say it is

> central and nothing will help him and dismiss him from there.

> Ok now that I got that out, I need some advice on how to convince

> him of the need for another ABR this time in the higher

> frequencies, sending us out of town if necessary. I need to

> convince him to at least try hearing aids, because even though we

> all agree they might not work, what is the harm in trying them?

> What if they do work and we are not giving him that benifit? We

> need to convince him to write a letter of recomendation for an FM

> system for the school and I want him to request one through our

> other insurance APIPA for home use. I know that the CRS

> insurance doesn't cover them, but he could order one through his

> office and bill APIPA, once CRS deny's them.

> I go in there so strong and they are so determined not to help

> that I get upset and leave so weak I am shaking. I need to be

> ready with all the documentation and reasons why we need these

> things so anything you guys can say to help me convince this

> doctor to help me would really really help. Please also say some

> prayers for us. I will be here until 1:00 tomorrow afternoon

> general mountain time.

>

> Now this is the reasonings I have come up with, first likes

> to listen to the leap pad with his ear to the speaker (suggests

> he would like it to be louder so he can hear it better), he plays

> with Andy's kinderbot (even though he doesn't understand it, he

> likes the sounds) he puts the volume up all the way, which is way

> too loud for me (hurts my ears, he sits really close to it. I

> have to move it to a different room because it is too loud.

> Again this suggests he wants to hear things so he makes them

> louder. When we sing at church he puts his ear to our cheek or

> even on our mouth so he can hear us better. When we sing basic

> songs to him that we use to teach him that it is time to do

> things, he tries to immitate them using vowel sounds with the

> correct amount of syllibles and usually the right vowel sound for

> each word indicating that he has interest in the song and wants

> to repeat things, but is not able to distinguish between the more

> spacific sounds in the song. He al!

> so will sometimes watch me talk when I say " mama he sais " baba "

> showing he wants to repeat sounds but doesn't get the whole word

> and sound but is trying to lip read. I think all of this

> suggests that amplification and an FM system would seriously

> help. If the amplification just amplifies the distortion then we

> can stop use, but I would like to see if there is somewhere where

> we can get loaner aids. We get the ear molds made and use loaner

> aids. I need a good pitch to use to show him that while aids

> might not work what if they do and we are denying him bennefit of

> them because we assume they won't when everything we are seeing

> in his every day life shows that he wants things to be louder and

> would prefer amplified sound over what he is hearing now and he

> might be able to develop some spoken language with that amplification.

> Please please give me some good solid advice that can show this

> guy who thinks he knows what is best that if he looks outside the

> box we probably would see some results. Yes he isn't a typical

> case, but I am tired of passing the buck, it is time to try some

> stuff that has already proven to have bennefit. We used an FM

> system as a trial thing and he did increase his responses and

> verbilizations, so I think that is enough evidence that it would help.

> I would also want him to write a recomendation that should

> be in a classroom with hearing impared kids because whether he is

> boarderline or not he presents as a child with a severe hearing

> imparement and is going to have to learn language in the same way

> that a HI child does, and therefore should be treated as such.

> He is not a normally hearing child whether the sound is mostly

> getting through or not, he is not making sense of the sound one

> way or another whether it is because of transmition delay, or

> hearing loss or a problem with the brain receiving the sound,

> this child has shown over the past three years that he is not

> going to learn as a normally hearing child or is he even close to

> a child with CAPD. He has all the problems as a Deaf child and I

> want him to apeal to the school that should be treated as

> Deaf. That is what I am ultimately looking for and I am sure he

> isn't going to be willing to do this, but I have to give it a

> shot. I can tell you right now !

> if these things don't go the way I am hoping (they usually are

> very narrow minded and only see what is right in front of them

> and if it is anything the least bit out of the ordinary they skip

> over it and pretend it wasn't there)then I am very likely to

> break down and just start balling in front of him. I don't want

> to do this, however that may be what needs to happen in order to

> get what we need from him. I really would be devistated if this

> didn't go well for us, it is one of our last chances to get

> what he needs and I can't afford to loose this battle. Thank you

> so much for your help.

>

>

>

[Guest guest]

Thank you, I am in the process of weeding through it right now. I am going to

put the main focus on the assistive devices and the school. I am asking for all

the prayers we can get because they are so reluctant to even call him hearing

impaired even though if you looked at him you would clearly see it. I just need

him to have an open mind and for him to have the will to help us as much as he

can, that's all I need. It all is riding on that.

ENT appointment tomorrow

>

>

> Anyone still up? I would like some help. Every time we see an

> audiologist or ENT I get nervous because they tend to like to

> ignore that has a mild loss because his symptoms are that a

> profound loss and that doesn't add up in their book, so instead

> of looking at the fact that his latencies are severely delayed

> which would explain his severe symptoms even with a mild loss,

> they prefer to ignore the loss and say it is central and leave it

> at that, even though there are things they could do like order an

> FM system or something for that. I need to explain to them why I

> don't think it is central as they seem to think. My reasoning is

> that is paying attention to sounds now, he is trying to

> repeate songs and sounds, the problem is he mainly only gets the

> vowel sounds unless he is looking at us at which point he

> attempts b's and d's and things. Sometimes he will make an m

> sound. My point is that if he had a central loss would he really

> be responding to some sounds and n!

> ot others? Not from what I have heard. They conveniently ignore

> the fact that he doesn't have an OAE on one side in the high

> frequencies which supports the high frequency hearing loss the

> ABR picked up on, only the loss the ABR picked up on was far less

> severe than a missing OAE would suggest which is why I want them

> to test up to 8000 HZ on ABR. My doctor was going to order one

> but when the nurse called the local hospital to do so they told

> her they only go to 4000 HZ. I don't know if this is something

> that is a policy or if it is equipment limitations, in which case

> I would want to be sent to Phoenix. I have to somehow convince

> this ENT to do a tone burst ABR up to 8000 HZ. The missing OAE

> is only missing at 6000 HZ and up I believe which tells me that

> his loss is more severe in the higher than 4000 HZ range and his

> loss isn't as boarderline as they think. I need to convince him

> that regardless of what they think we need this higher frequency

> loss ruled out or identif!

> ied in order to get him proper services at school. They are very

> reluctant to give him anything including tests since he is so

> " boarderline " . What I dont' understand is how he is clearly in

> the mild-moderate range for children. For children mild range is

> 15-30 or in some cases 20-40 depending on who you see, is at

> 30 dB at 4000 HZ I am sure that his loss is more significant if

> you go up higher but everyone wants to ignore that and say it is

> central and nothing will help him and dismiss him from there.

> Ok now that I got that out, I need some advice on how to convince

> him of the need for another ABR this time in the higher

> frequencies, sending us out of town if necessary. I need to

> convince him to at least try hearing aids, because even though we

> all agree they might not work, what is the harm in trying them?

> What if they do work and we are not giving him that benifit? We

> need to convince him to write a letter of recomendation for an FM

> system for the school and I want him to request one through our

> other insurance APIPA for home use. I know that the CRS

> insurance doesn't cover them, but he could order one through his

> office and bill APIPA, once CRS deny's them.

> I go in there so strong and they are so determined not to help

> that I get upset and leave so weak I am shaking. I need to be

> ready with all the documentation and reasons why we need these

> things so anything you guys can say to help me convince this

> doctor to help me would really really help. Please also say some

> prayers for us. I will be here until 1:00 tomorrow afternoon

> general mountain time.

>

> Now this is the reasonings I have come up with, first likes

> to listen to the leap pad with his ear to the speaker (suggests

> he would like it to be louder so he can hear it better), he plays

> with Andy's kinderbot (even though he doesn't understand it, he

> likes the sounds) he puts the volume up all the way, which is way

> too loud for me (hurts my ears, he sits really close to it. I

> have to move it to a different room because it is too loud.

> Again this suggests he wants to hear things so he makes them

> louder. When we sing at church he puts his ear to our cheek or

> even on our mouth so he can hear us better. When we sing basic

> songs to him that we use to teach him that it is time to do

> things, he tries to immitate them using vowel sounds with the

> correct amount of syllibles and usually the right vowel sound for

> each word indicating that he has interest in the song and wants

> to repeat things, but is not able to distinguish between the more

> spacific sounds in the song. He al!

> so will sometimes watch me talk when I say " mama he sais " baba "

> showing he wants to repeat sounds but doesn't get the whole word

> and sound but is trying to lip read. I think all of this

> suggests that amplification and an FM system would seriously

> help. If the amplification just amplifies the distortion then we

> can stop use, but I would like to see if there is somewhere where

> we can get loaner aids. We get the ear molds made and use loaner

> aids. I need a good pitch to use to show him that while aids

> might not work what if they do and we are denying him bennefit of

> them because we assume they won't when everything we are seeing

> in his every day life shows that he wants things to be louder and

> would prefer amplified sound over what he is hearing now and he

> might be able to develop some spoken language with that amplification.

> Please please give me some good solid advice that can show this

> guy who thinks he knows what is best that if he looks outside the

> box we probably would see some results. Yes he isn't a typical

> case, but I am tired of passing the buck, it is time to try some

> stuff that has already proven to have bennefit. We used an FM

> system as a trial thing and he did increase his responses and

> verbilizations, so I think that is enough evidence that it would help.

> I would also want him to write a recomendation that should

> be in a classroom with hearing impared kids because whether he is

> boarderline or not he presents as a child with a severe hearing

> imparement and is going to have to learn language in the same way

> that a HI child does, and therefore should be treated as such.

> He is not a normally hearing child whether the sound is mostly

> getting through or not, he is not making sense of the sound one

> way or another whether it is because of transmition delay, or

> hearing loss or a problem with the brain receiving the sound,

> this child has shown over the past three years that he is not

> going to learn as a normally hearing child or is he even close to

> a child with CAPD. He has all the problems as a Deaf child and I

> want him to apeal to the school that should be treated as

> Deaf. That is what I am ultimately looking for and I am sure he

> isn't going to be willing to do this, but I have to give it a

> shot. I can tell you right now !

> if these things don't go the way I am hoping (they usually are

> very narrow minded and only see what is right in front of them

> and if it is anything the least bit out of the ordinary they skip

> over it and pretend it wasn't there)then I am very likely to

> break down and just start balling in front of him. I don't want

> to do this, however that may be what needs to happen in order to

> get what we need from him. I really would be devistated if this

> didn't go well for us, it is one of our last chances to get

> what he needs and I can't afford to loose this battle. Thank you

> so much for your help.

>

>

>