Help with hearing aids for child

R

RyLeigh's mom

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Hello everyone,
I am new to the forum and hope a am posting in the correct place to hopefully get some good advise for my daughter. My daughter RyLeigh is 10 months old and is HOH. She had an ABR in august the results from this as I understand them are 500-30db 2000-50db 4000- 55db (both ears the same) testing was done to confirm that this was a problem in the inner ear and she was diagnosed with mild to moderate sensorineural hearing loss. By her next visit (she was 7 months at the time) I asked if she could be put in a booth for a hearing test even though she was alittle young. This test revealed that she had better hearing in the higher frequencies than we had though the 400 40bd 6000-30 and 8000-30. two hearing test later @ 10 months old her audiogram looks like this
500-20db
1000-45db
2000-40db
4000-35db
6000-20db
8000-20db. From what I have researched I think this is commonly called a cookie bit hearing loss and I mostly read bad things about it. I have several questions and any advise or opinions will be appreciated.
First is it normal to have different results from the ABR and the in booth hearing test mainly @ the 4000hz where the difference in the two is now 20db I am not sure how big of a dif fence that is.
I have always though RyLeigh responds well to sound and would have never suspected a problem if not for her failing her newborn hearing screen (in one ear) It is very hard for me to find sounds that she doesn't respond to. Example she responds to the click the TV makes when you first turn it on (before the picture comes on) this is a pretty soft sound. However she will not respond to her name being spoken at a whisper if you are more than about 5 feet away from her, she will respond to words that have the s sound in them whispered at the same distance.
I wonder could here hearing still be better than in her last hearing test especially in the high frequencies. My big question and my biggest worry would be can we cause more damage (not actually to her ears but to her ability to learn speech) by using hearing aids that might not be programmed correctly for her.
She has had her new hearing aids for about a week and actually have been really good about not pulling them out. When she is wearing them she seems a bit more fussy and loud noises startle her, actually loud noises have always startled her now it is just worse. I am very disappoint in the amount of whistling her aids do anytime anything gets close to them. I think that reading stories is import for her, as sitting close on my lap she could hear all of the speech sounds(without aids), now I wonder if she is hearing better or worse with all the whistling anytime her head gets to close to me and I also wonder if the aids are not programmed correctly could they actually make speech sound worse than her natural hearing. Also she doesn't pay attention to a whisper spoken at more than 5 ft away with the aids in and will still respond to s sounds whispered at the same distance.
Her aids are Oction Sarfari I was told these would be a good choice for her, but after doing some research myself I am not so sure, they only have 6 frequencies to program, I have read this isn't enough to get a good result with a cookie bite loss.
Anyone have any ideas what hearing aid might be a better choice? Or if it is even possible to program a infants hearing more precisely?
It might be useful to mention that although at 10 months RyLeigh can not talk she dose understand many words I would guess about 30 or so that I am sure of. Looking at her audiogram as I understand it the p sounds is very hard for her to hear. She has a favorite toy pony (that she rides) she knows the word pony well, if I say leave off the p and say ony to her she will not laugh and look for pony, I have also tried filling in other letters for the p as well, and i have covered my mouth incase she is reading my lips. about 90% of the time I have tried this test she will not respond to the other words in the way she dose for pony. I really don't know if this means anything or not. And it would be so much easier if I could just ask her what she hears so we would know exactly what she needs. Developing good speech is our # 1 concern for her.
Also when she was first diagnosed I received lots of information on children with hearing loss and heard many touching and hopeful stories, however the majority of information was about severe to profound hearing loses and a lot about colear implants which while interesting and amazing do not really pertain to RyLeigh. I can find little information on children with a mild to moderate loss and virtually none when I add the cookie bite in. If anyone knows where I might find additional information could please let me know, that would be great. Sorry this post has gotten so long, I tried to include everything I though might be relevant and am sure there is still more I have forgotten. Again any advise in general about what else can be done to help our daughter is appreciated. Thanks for your time.
RyLeigh's Mom
 
U may know me as Otikid05 on the other forum, but there are more options that U could take, either stay with the brand or move 2 another one and it depends on how she feels about them.
 
she was diagnosed with mild to moderate sensorineural hearing loss
Click to expand...
.

Hi, I think the good audi will know best what model of HAs will suit your daughter best for now.

I wanted to tell you something else, though, as I have sensori neural hearing loss myself and from my own experience,
as much as I hate to tell you this,
it's a progressive hearing loss.

I can not stress enough how important it is to your child to be kept in Deaf culture and have her learn ASL NOW.

She should be immersed both in hearing and deaf world, equally for one day she will need to relay on both.
You, too, should learn ASL, it will be fun for both of you,
also many times it will come handy - trust me.

Fuzzy
 
Audiofuzzy said:
.

Hi, I think the good audi will know best what model of HAs will suit your daughter best for now.

I wanted to tell you something else, though, as I have sensori neural hearing loss myself and from my own experience,
as much as I hate to tell you this,
it's a progressive hearing loss.

I can not stress enough how important it is to your child to be kept in Deaf culture and have her learn ASL NOW.

She should be immersed both in hearing and deaf world, equally for one day she will need to relay on both.
You, too, should learn ASL, it will be fun for both of you,
also many times it will come handy - trust me.

Fuzzy
Click to expand...

I argee, take it for granted.
 
RyLeigh's mom said:
My big question and my biggest worry would be can we cause more damage (not actually to her ears but to her ability to learn speech) by using hearing aids that might not be programmed correctly for her.
...................................................................................................
...................................................................................................
I also wonder if the aids are not programmed correctly could they actually make speech sound worse than her natural hearing.
...................................................................................................
...................................................................................................
Developing good speech is our # 1 concern for her.
................................................................................................
...............................................................................................
Click to expand...


I am not sure if it is at all possible to tune up the hearing aids just so
so they will perform 100% for such a little child,
precisely for the lack of effective communication at this age, hmmm.

I sense you are very very concerned, panicking almost, that your child's already considerable hearing loss will experience further terrible and irreversible damage should anything will go amiss, such as wrong or insufficient hearing aids, or improper oral exercises or such?
I feel you, but please, there is only so much anyone, including you,
can control for she is still very little.
Some things are beyond reach, and what's gonna happen,
will happen.
I have a gut feeling everything will be alright with RyLeigh, though :)

I would like to ask you something, however.
I see that it is of the most importance to you that your daughter RyLeigh
can hear and can speak.
You are doing everything possible to supply her with means to hear and you seem almost frantic trying to have her speak.
Like you said it yourself "Developing good speech is our # 1 concern for her"?
I am wondering, however, why?
It's good to develop speech, I agree, but, really, should it be such an absolute priority for a deaf child?

Has anybody UNBIASED told you there is another excellent option, too?

Your daughter has a hearing loss. It is not something to grieve over.
Far from it!, - if you only take time to get to know the Deaf community,
you will learn this is rich, rewarding and happy society, capable of everything and anything the hearing people do.

There are deaf doctors, lawyers, musicians, actors, - all sort of professionals -
if only the deaf person applies themselves, they can achieve anything
just as anyone does.

The only difference is - we use hands when we speak :)

Please, please, before you concentrate on raising your daughter as a "hearie" -
please consider the fact that she ISN'T quite one.
Please give her a chance to at least have an access to both worlds, as I mentioned before
so when she grows up she can choose herself where she wants to be.

I am saying this because like your daughter, I was most likely born with hearing loss
which went undetected until I was 5. My parents decided to keep me mainstream, I never learned to sign, and never got to know the deaf community.
When I grew up, as an adult I felt I didn't quite belong to the hearing world yet I didn't belong to the deaf either. I felt very alone, alienated at times,
and even today at 54, I wish my parents gave me the this choice to make on my own.
Hardly anyone with hearing loss in my situation says otherwise, so please take it under consideration.
I understand it is very hard for a hearing parent to accept their child hearing loss, let alone let it go,
but really, the deaf people CAN be happy DEAF.

Fuzzy
 
Audiofuzzy said:
.

Hi, I think the good audi will know best what model of HAs will suit your daughter best for now.

I wanted to tell you something else, though, as I have sensori neural hearing loss myself and from my own experience,
as much as I hate to tell you this,
it's a progressive hearing loss.

I can not stress enough how important it is to your child to be kept in Deaf culture and have her learn ASL NOW.

She should be immersed both in hearing and deaf world, equally for one day she will need to relay on both.
You, too, should learn ASL, it will be fun for both of you,
also many times it will come handy - trust me.Fuzzy
Click to expand...

Not to add to audiofuzzy's bad news but I was told the exact same thing and my son had another progressive jump this past year. I don't want to be the bearer of bad news but there is always something to look to.

I totally agree with everything bolded. My sons hearing loss at first affected me to the point of being upset,scared, frantic, just not knowing what to do just as you seem from your post. But it will in due time fall in to place. Take everyones advice :) especially that safarigirl she has me sold on our next hearings aids lol.
 
RyLeigh's mom said:
Hello everyone,

Her aids are Oction Sarfari I was told these would be a good choice for her, but after doing some research myself I am not so sure, they only have 6 frequencies to program, I have read this isn't enough to get a good result with a cookie bite loss.
Anyone have any ideas what hearing aid might be a better choice? Or if it is even possible to program a infants hearing more precisely?
Click to expand...

Everyone's hearing loss is different. No one on the internet really can tell you what is best, only the audiologists that actually tested your daughter can decide which hearing aids would be the better choice.

In order for hearing aids to be programmed precisely, you need feedback from the person wearing it. Unfortunately your daughter is way too young to give some real feedback, so it is a trial/error test for you.

It would not hurt to use visual communication at this point (ASL, etc). Like the others said, it is fun to learn too. Remember, hearing AND seeing makes for the best communication.
 
Audiofuzzy said:
I am not sure if it is at all possible to tune up the hearing aids just so
so they will perform 100% for such a little child,
precisely for the lack of effective communication at this age, hmmm.

I sense you are very very concerned, panicking almost, that your child's already considerable hearing loss will experience further terrible and irreversible damage should anything will go amiss, such as wrong or insufficient hearing aids, or improper oral exercises or such?
I feel you, but please, there is only so much anyone, including you,
can control for she is still very little.
Some things are beyond reach, and what's gonna happen,
will happen.
I have a gut feeling everything will be alright with RyLeigh, though :)

I would like to ask you something, however.
I see that it is of the most importance to you that your daughter RyLeigh
can hear and can speak.
You are doing everything possible to supply her with means to hear and you seem almost frantic trying to have her speak.
Like you said it yourself "Developing good speech is our # 1 concern for her"?
I am wondering, however, why?
It's good to develop speech, I agree, but, really, should it be such an absolute priority for a deaf child?

Has anybody UNBIASED told you there is another excellent option, too?

Your daughter has a hearing loss. It is not something to grieve over.
Far from it!, - if you only take time to get to know the Deaf community,
you will learn this is rich, rewarding and happy society, capable of everything and anything the hearing people do.

There are deaf doctors, lawyers, musicians, actors, - all sort of professionals -
if only the deaf person applies themselves, they can achieve anything
just as anyone does.

The only difference is - we use hands when we speak :)

Please, please, before you concentrate on raising your daughter as a "hearie" -
please consider the fact that she ISN'T quite one.
Please give her a chance to at least have an access to both worlds, as I mentioned before
so when she grows up she can choose herself where she wants to be.

I am saying this because like your daughter, I was most likely born with hearing loss
which went undetected until I was 5. My parents decided to keep me mainstream, I never learned to sign, and never got to know the deaf community.
When I grew up, as an adult I felt I didn't quite belong to the hearing world yet I didn't belong to the deaf either. I felt very alone, alienated at times,
and even today at 54, I wish my parents gave me the this choice to make on my own.
Hardly anyone with hearing loss in my situation says otherwise, so please take it under consideration.
I understand it is very hard for a hearing parent to accept their child hearing loss, let alone let it go,
but really, the deaf people CAN be happy DEAF.

Fuzzy
Click to expand...

Fuzzy, AWESOME post! And I just have to add.....The gross majority of HOH kids can develop spoken language without intense therapy. They still have to be in speech for articualtion, volumne, pitch etc.....and the thing is most dhh kids will still have speech quality issues. Most hoh kids get intense therapy and immersian into the hearing world already. They don't suffer from a lack of exposure to hearing culture. But they very rarely get to learn ASL and do deaf ed and parcipatate in deaf culture. A book you need to read is : On the Fence: The Hidden World of the Hard of Hearing by Mark Drolsbaugh Products for Deaf, Hard of Hearing and Sign Language
Think about it this way.........if your kid had the chance to grow up bilingal, wouldn't you take it? Well with ASL and deaf culture she CAN. She can be bilingal in both ASL and spoken English....she can also function both WITH and without her hearing aids. Yes, her hearing aids give her partial access to the hearing world.....but she's HOH.....she can never be fully 100% hearing. So give her the gift of ASL and deaf ed and deaf culture. It really is a lot more fun then "How the Ear Hears" and " Hearing Health 101" If you talk to dhh adults, who were raised orally, they'll tell you they're glad they have oral skills....BUT many if not most of them will also tell you they wish they'd learned ASL too!
I do feel that if hearing parents demand spoken language skills from their dhh kids, that hearing parents should meet their dhh kids halfway, and learn ASL for them!
 
I have an Oticon safari hearing aid that is child friendly. It has a red light that flash when the battery is going dead so the parents will know it time to put a new battery in. My granddaughter saw my HA flashing and asked me why it was doing that! I thought that was funny that my 6 yo granddaughter told me I needed a new battery. You can also lock the battery door so a child can't get the battery out on their own.
 
RyLeigh's mom said:
<snip>

[Her aids are Oction Sarfari I was told these would be a good choice for her, but after doing some research myself I am not so sure, they only have 6 frequencies to program, I have read this isn't enough to get a good result with a cookie bite loss.
<snip>
Click to expand...


I think one factor may be where the programming handles are in the hearing aids. If the programming handles happen to be where your child's hearing loss changes from going from an downward slope to an upward slope -- the hearing aids may be an OK fit.

Also, your child's audi can print out the hearing aid's gain and that printout will look similar to an audiogram, and you can compare it to your child's audigram. They should "mesh". That is where your child has a greater loss, the hearing aid should have a larger gain (or amount of decibels or loudness added to an incoming sound).

One difference between what a printout of the hearing aid gain and an audiogram is that the printout of the hearing aid's gain usually has the zero decibels on the bottom of the graph instead of the top, if I remember correctly.

Some audi's don't like to have in depth conversations with clients or clients' parents. If you get that kind of response, just feel free to take the printouts and get another audi's opinion. In addition to your child's audiogram, hearing aids' gain (I may have misremembered the name of that report), I would also make sure you get a copy of the hearing aids program settings. That can be printed out also.

Welcome to the forum. Also, I hope you won't be offended by this suggestion but if you could break up your post with white spaces (blank lines) it would be much easier to read.
 
Oh, and just to reassure you. The gross majority of deaf kids, even those who are deaf of deaf or who attend deaf schools/dhh programs get a very hefty dose of "Clarke School /Hard of hearing" style interventions/ educational programmings.
One of the biggest myths that is hurting Deaf schools and deaf programs is that they're only for students who only use ASL and don't use CIs or hearing aids. Virtually ALL deaf schools/programs offer speech therapies....and the speech therapists affliated with such programs tend to be more experianced with working with dhh kids, then a speech therapist at a neighborhood school. Again, most HOH kids can and do aquire spoken language easier then deaf kids, although not as well as hearing kids. (meaning they still need early intervention)
Contact your state's School for the Deaf. I really do think you will be amazed at what happens at a deaf school.....and HOH kids can and do attend deaf schools and can and do learn ASL as a second language.
 
Audiofuzzy said:
.

Hi, I think the good audi will know best what model of HAs will suit your daughter best for now.

I wanted to tell you something else, though, as I have sensori neural hearing loss myself and from my own experience,
as much as I hate to tell you this,
it's a progressive hearing loss.

I can not stress enough how important it is to your child to be kept in Deaf culture and have her learn ASL NOW.

She should be immersed both in hearing and deaf world, equally for one day she will need to relay on both.
You, too, should learn ASL, it will be fun for both of you,
also many times it will come handy - trust me.

Fuzzy
Click to expand...

Sensorineural hearing loss is not always progressive!!
 
Sarfarigirl2011 said:
LOL so true Lissa, but it may get worse when we age!

@blondon704, glad U love my cool looking aids :)
Click to expand...

We meet the new audiologist Tuesday, surprisingly enough I just called them today, they have been so hesitant to accept new patients. O/t :) sorry.
 
Lissa said:
Sensorineural hearing loss is not always progressive!!
Click to expand...

Sensorineural hearing loss is nerve deafness. It can be progressive hearing loss as one ages. It's rather quite common for older people to experience a decline in hearing from sensorineural hearing loss. Maybe the term "progressive" need to be spelled out somehow and clarified?
 
about the whistling, don't worry about it. my hearing aids whistle too if anyone gets too close but I never hear it for it's too high pitch and thus beyond my range of hearing (with hearing aids). It annoys the heck out of hearing people but never bothered me. One solutio would be to turn down the volume but the obvious downside would be less assisted hearing.

Meanwhile, your child can see, learn to use your hands to communicate with him for while he may only partially hear words, his eyes can understand every sign. This is really important to remember in terms of his not being left out of socializing and ability to follow and understand teachers in school, let alone the importance of feeling like he fits in at the dinner table at home, not left out and staring out the window.

I realize this is all new to you, don't worry, you will get it all figured out sooner or later, meanwhile, learn ASL as soon as possible.
 
Lissa said:
Sensorineural hearing loss is not always progressive!!
Click to expand...

Hmm, true,
however most people with sensorineural hearing loss including myself I know
got it in progressive form, though.

I just assumed it is most common, of course I can be mistaken.

How about you, I suppose yours isn't progressive? if you have s-n at all?


Fuzzy
 
That whistling is mic feedback..... You might try plugging up the air hole in the mold. I did this and it took care of the problem.
 
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