Hearing parents and siblings, HOH 9-month-old.

Thank you! I hope so too! Ever since this all began, I have not really cared so much about the diagnosis of hearing, hearing loss, progressive hearing loss, etc...I just want a consistent answer, and now today is just adding another thread to the web!

Thanks!! :)
 
now that OAEs and ABRs are completely different, but all 3 audiologists I have had said that booth testing is more reliable than an ABR, that an ABR is not a "hearing test" but a nerve test, and that they take a child's behavioral response in the sound booth over an ABR test. Maybe that is wrong, I don't know...but that is what all 3 of my audis have said, and since he passed the OAE today on both ears when he has never been able to pass in the left and then responded to all the tones at normal hearing level in the sound booth other than one, which was replayed later and he then responded at 20, I can't help but be a little confused.

We are most likely still going to do the 3rd ABR, but I have been in agony for months and months with all these conflicting results.
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Completly understood! So it's not the potential loss, it's just you really don't know. Hard to make plans when you just don't know.
It might be just a fluke. I will tell you that I've had ABR and they showed my loss to be profound, even thou I have a hoh loss.
 
deafdyke said:
Completly understood! So it's not the potential loss, it's just you really don't know. Hard to make plans when you just don't know.
It might be just a fluke. I will tell you that I've had ABR and they showed my loss to be profound, even thou I have a hoh loss.
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That is exactly it, and that's all it has ever been. I can't speak for deaf or HOH, but I know that most every hearing parent is going to go through a grieving process over their child's hearing loss. I feel like I have never been able to do that because every test changes, and it is obviously not just changing in a progressive direction since today's testing was I basically normal! I'm trying not to be irrational and tell myself that this is just one of the many he has had and that he has been shown to have hearing loss on others, BUT I keep also telling myself that had he just gone in today for hearing testing for the first time that we would have walked out today with a "hearing" child and no diagnosis of a loss.

My parental adviser actually cracked up on the phone when I told her. It is almost funny how many different things I have been told and been through these past 5 months. It is crazy! But I really feel like I'm in good hands now with our new audiologist. She was an audiologist in the twin cities in Minnesota, and she has a lot of experience. She seemed to really understand the points that I made and often made them before I got a chance to.

I just want to know!

I really appreciate all of your answers and input, deafdyke...you are very helpful, and since you share the same sort of loss, I would love to continue to get your input and thoughts. I find it interesting that your ABR showed a more severe loss than you actually have...and I do know they can be wrong. I spent many, many hours researching ABR tests in medical journals, etc., and I think I read that 4-8% can be a false positive test in studies...I may be completely off in that number, but it was a significant percentage. 4-8% may not seem like a lot...but 4 in 100 ABRs being wrong and those kids diagnosed with hearing loss is pretty significant.
 
To address your first question: the tests you named are used for screening purposes...to tell you whether there is a possibility of a hearing loss. They really aren't very accurate and making a definitive diagnosis based on levels of hearing loss. The most accurate way to determine that is through testing that requires the child's responses to sounds, and that, unfortunately, does not come until about age 2. Even kids that show a profound loss with the ABR have been known to show a much lesser loss when response testing is done. The point is not really the level of hearing loss, but how the child responds to his hearing loss. Some people with a profound loss can speak very well, while some with just a moderate loss are unable to do so. There are just so many variables involved.

BTW: beautiful family!
 
The most accurate way to determine that is through testing that requires the child's responses to sounds, and that, unfortunately, does not come until about age 2. Even kids that show a profound loss with the ABR have been known to show a much lesser loss when response testing is done. The point is not really the level of hearing loss, but how the child responds to his hearing loss. Some people with a profound loss can speak very well, while some with just a moderate loss are unable to do so. There are just so many variables involved.
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Really jillo? I recall faire joure saying that a really talented audi can tell how well a toddler can hear with hearing aids, and can tell if they need a CI or not, if they are an ambigious canidate.
And yeah....there are kids with profound losses who can benifit from HA, just as their are kids with hoh losses who can benifit from HA.
 
my 9 month old

hi i have a son that is 9 months old and was born at 26 weeks. he has profound hearing lost. My son just got his hearing aides today, all he does is sleep! i want to know if you have any suggestions about hearing aides? i do make sound and he doesnt look right away to the direction it is coming from. should i give him some time to get used to them? im new to this please help! thank you:dizzy:
 
Maybe give him time to get used to them? If you want his attention, try flicking the lights on and off in a room.
 
3littlemen said:
Hello, all!

My name is Lauren and I have 3 little boys, Gavin (6), Tyler (2), and Grayson (9 months).

We found out at birth that Grayson may have had a hearing loss. He referred with the newborn screening, and he had the same results at the doctor's office 2 or 3 times. I went to an audiologist who said he detected fluid and that it was probably just from birth and to have the pediatrician give him some antibiotics. My ped didn't like that answer, so she sent me somewhere else. Did an ABR when he was 2 months old, and I was very shocked when they told me that he had bilateral mild-moderate hearing loss. I didn't believe it. We had spent those first 2 months making noises, etc., and he always responded. But we never thought much about it as far as him actually having a hearing loss...surely our child was "normal."

We sought a second opinion with another ENT and audiologist. The second ABR was performed under anesthesia. It also showed a mild-moderate hearing loss, moderately-severe in 1 pitch or frequency...I am still not educated enough on all this stuff! Anyway, that was a very hard thing to accept because the results were very different than the first ABR. The first ABR showed his right ear to almost be normal hearing, whereas on the second test it showed it to be worse overall than the left.

He got his hearing aids a month later and has worn them ever since. I have always been so confused about this entire situation, though, because of the differences in tests (even our parental adviser thought there was too great of a difference from the first). Of course, the logical explanation would be that his loss had progressed, but I was always confused by that because he passed the OAE the day before he had the second ABR. And he had passed another OAE a few weeks prior to that. So, he has passed OAEs and has two different ABR results...

We are now getting a third audiologist to perform an ABR and see what we get. I would have a much easier time accepting all of this if his results MATCHED or at least were very similar, but the two ABRs had up to 25 dB differences...and then the OAEs. I know it is possible to pass an OAE and fail an ABR, but my prior audiologist said it would be impossible for him to have a 60 dB loss and pass an OAE...oh, really...????? Because he did! She didn't know he had because she wasn't the one who performed it.

Anyways, I LOVE my little boy and have been very proactive in helping him. I just want him to get the best care possible. He has been wearing his hearing aids now for 4 months, and he seems to be developing normally. Makes dada, mama, neh neh, gih gih, lala, puh sounds, etc.

I felt compelled to introduce myself because I read some posts here where people said their parents had always taken their hearing aids off in pix. I think that is terrible! :( I NEVER take my son's aids off for pix. I mean, sure, it may be "better" aesthetically from a vain society's standpoint not to have them in the pix, but they are something he needs! I would never want him to wonder why we took something he needed from him for a picture...that's like taking a person out of a wheelchair for a picture...

Any input anyone has as to the weirdness of my son's tests is appreciated as well....here is a pic of Grayson!
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He's soooooooo cute!!
 
My son is 3.5 months and has been wearing his hearing aids for about 4 weeks. He has moderate-severe loss. One ear supposedly hears better at high frequencies.
His two ABRs were pretty consistent so I am not having the diagnosis concerns you are but I am having the same struggles with decisions. I just want him to reach his full potential however that may be.
We do sign with him. I sign as much as possible and just teach myself bit by bit. His Dad and I will take formal lessons eventually. I know more sign than Dad and am his main teacher. I had more time to learn while on maternity. We both work. We do have a hearing daughter who is almost 4. Our son goes to daycare at her school and the teachers are trying to do some basic signing with him too and help him along however they can but I am really his primary teacher and I do feel guilt that he has to spend so much of his day there. But it's a truly loving environment with staff that we've come to know so well for over 3 years. And he's being exposed to more faces and language there I suppose.
Our parent advisor is very pro-sign. She agrees that there is lots of controversy and both sides have arguments to their preference. But she feels that signing with our son can only help him and believes in the evidence supporting its positive effect on language even if the child goes oral. She said do both and he'll decide. Her advice for now is to focus on vocabulary. I do use simple asl phrases and look up words all the time so that I can sign as much as possible when we talk.
I think with such a supportive and proactive mom like you, Grayson will be just fine. Feel free to message me any time to chat! We have similar situations.

Oh and your boy is such a doll. My son wears bright blue earmolds with blue/silver aids, looks darn sharp in them and adorable in pictures! We wear them on him proudly.
 
Oops just read the later posts about the newer testing. Missed that before....hope it works out how you want! We will do some behavioral testing when our son is around 7 months.
 
Test

Aw! Lovely pictures of Grayson! What a doll! :)

I'm deaf myself and I used hearing aids all of my life until the age of 21, I decided to go for Cochlear Implants (CI).

When I was a baby, between 6-9mths, my parents took me to the docs and the doc walked behind me and clapped his hand, i turned around and the doc said.. she's FINEEEEEE.... my parents was furious, they knew that i was a very curious baby and of course, if someone walk behind me, i would turn around to see whats up. crazy how the testing systems work back then and im surprised that it's still not accurate nowadays!! crazy.




3littlemen said:
Hello, all!

My name is Lauren and I have 3 little boys, Gavin (6), Tyler (2), and Grayson (9 months).

We found out at birth that Grayson may have had a hearing loss. He referred with the newborn screening, and he had the same results at the doctor's office 2 or 3 times. I went to an audiologist who said he detected fluid and that it was probably just from birth and to have the pediatrician give him some antibiotics. My ped didn't like that answer, so she sent me somewhere else. Did an ABR when he was 2 months old, and I was very shocked when they told me that he had bilateral mild-moderate hearing loss. I didn't believe it. We had spent those first 2 months making noises, etc., and he always responded. But we never thought much about it as far as him actually having a hearing loss...surely our child was "normal."

We sought a second opinion with another ENT and audiologist. The second ABR was performed under anesthesia. It also showed a mild-moderate hearing loss, moderately-severe in 1 pitch or frequency...I am still not educated enough on all this stuff! Anyway, that was a very hard thing to accept because the results were very different than the first ABR. The first ABR showed his right ear to almost be normal hearing, whereas on the second test it showed it to be worse overall than the left.

He got his hearing aids a month later and has worn them ever since. I have always been so confused about this entire situation, though, because of the differences in tests (even our parental adviser thought there was too great of a difference from the first). Of course, the logical explanation would be that his loss had progressed, but I was always confused by that because he passed the OAE the day before he had the second ABR. And he had passed another OAE a few weeks prior to that. So, he has passed OAEs and has two different ABR results...

We are now getting a third audiologist to perform an ABR and see what we get. I would have a much easier time accepting all of this if his results MATCHED or at least were very similar, but the two ABRs had up to 25 dB differences...and then the OAEs. I know it is possible to pass an OAE and fail an ABR, but my prior audiologist said it would be impossible for him to have a 60 dB loss and pass an OAE...oh, really...????? Because he did! She didn't know he had because she wasn't the one who performed it.

Anyways, I LOVE my little boy and have been very proactive in helping him. I just want him to get the best care possible. He has been wearing his hearing aids now for 4 months, and he seems to be developing normally. Makes dada, mama, neh neh, gih gih, lala, puh sounds, etc.

I felt compelled to introduce myself because I read some posts here where people said their parents had always taken their hearing aids off in pix. I think that is terrible! :( I NEVER take my son's aids off for pix. I mean, sure, it may be "better" aesthetically from a vain society's standpoint not to have them in the pix, but they are something he needs! I would never want him to wonder why we took something he needed from him for a picture...that's like taking a person out of a wheelchair for a picture...

Any input anyone has as to the weirdness of my son's tests is appreciated as well....here is a pic of Grayson!
Click to expand...
 
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