Hearing parent/HOH baby <3

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ProudMommy89

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Hello Everyone,
My name is Janet and I am new here. :wave: I have a beautiful HOH son who is now 13 months old. (Time flies!) He was diagnosed as having severe/profound hearing loss.

Since he has been diagnosed, we have been told he is a candidate for a CI. I finally was able to take him to and CI specialist (after 6 months of harassing medicaid) and we were told he is in fact NOT a candidate. The results from the past year at his audiologist and the recent test don't match. I don't believe time made too much of the difference because the last hearing test he had was a month BEFORE the meeting of Balkany. I am confused. He owns hearing aids and with the aids in he has mild hearing loss in his right and moderate in the left ear. When I speak to his he doesn't hear only when I scream, which I don't like doing because well, I don't enjoy screaming at my child.We were advised to try AV therapy.

By the way, I live in Florida. The doctor I am referring to is called Thomas Balkany. Has anyone ever seen him? Anyways, I do not believe a CI is a solution or "cure". I love my son just the way he is whether I must learn ASL or not. I've been holding off because Balkany refuses some patients who teach their infants ASL. He is considered the best so I'm going to wait a bit. At the same time, I don't want to waste time helping my son. I an getting a second opinion from my son's audiologist.

What does everyone else think?
This is my first child so I am trying to do my best.
I know if Edmund (my son) receives the CI he will lose all the hearing he does have so I know why he wants to make sure, but he mainly focused on his co-workers results and ignored the rest... It has me worried.
 
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ProudMommy89 said:
Hello Everyone,
My name is Janet and I am new here. :wave: I have a beautiful HOH son who is now 13 months old. (Time flies!) He was diagnosed as having severe/profound hearing loss.

Since he has been diagnosed, we have been told he is a candidate for a CI. I finally was able to take him to and CI specialist (after 6 months of harassing medicaid) and we were told he is in fact NOT a candidate. The results from the past year at his audiologist and the recent test don't match. I don't believe time made too much of the difference because the last hearing test he had was a month BEFORE the meeting of Balkany. I am confused. He owns hearing aids and with the aids in he has mild hearing loss in his right and moderate in the left ear. When I speak to his he doesn't hear only when I scream, which I don't like doing because well, I don't enjoy screaming at my child.We were advised to try AV therapy.

By the way, I live in Florida. The doctor I am referring to is called Thomas Balkany. Has anyone ever seen him? Anyways, I do not believe a CI is a solution or "cure". I love my son just the way he is whether I must learn ASL or not. I've been holding off because Balkany refuses some patients who teach their infants ASL. He is considered the best so I'm going to wait a bit. At the same time, I don't want to waste time helping my son. I an getting a second opinion from my son's audiologist.

What does everyone else think?
This is my first child so I am trying to do my best.
I know if Edmund (my son) receives the CI he will lose all the hearing he does have so I know why he wants to make sure, but he mainly focused on his co-workers results and ignored the rest... It has me worried.
Click to expand...

That's certainly a different attitude in the bold. And screaming won't really make him hear more.

Not a good idea to hold off on ASL, as he needs some form of language.
 
Oh, I didn't even know I put it in bold....Sorry. I really new to this.

I spoke to the Doctor and told him I needed to at least teach him some words now that he's a bit older. Like milk, dog, thirsty, etc.

Replace scream with shout.(I was became frustrated thinking about it ) I know it won't make him hear more but it's the only thing that makes him react to the sound of my voice.
 
ProudMommy89 said:
Hello Everyone,
My name is Janet and I am new here. :wave: I have a beautiful HOH son who is now 13 months old. (Time flies!) He was diagnosed as having severe/profound hearing loss.

Since he has been diagnosed, we have been told he is a candidate for a CI. I finally was able to take him to and CI specialist (after 6 months of harassing medicaid) and we were told he is in fact NOT a candidate. The results from the past year at his audiologist and the recent test don't match. I don't believe time made too much of the difference because the last hearing test he had was a month BEFORE the meeting of Balkany. I am confused. He owns hearing aids and with the aids in he has mild hearing loss in his right and moderate in the left ear. When I speak to his he doesn't hear only when I scream, which I don't like doing because well, I don't enjoy screaming at my child.We were advised to try AV therapy.

By the way, I live in Florida. The doctor I am referring to is called Thomas Balkany. Has anyone ever seen him? Anyways, I do not believe a CI is a solution or "cure". I love my son just the way he is whether I must learn ASL or not. I've been holding off because Balkany refuses some patients who teach their infants ASL. He is considered the best so I'm going to wait a bit. At the same time, I don't want to waste time helping my son. I an getting a second opinion from my son's audiologist.

What does everyone else think?
This is my first child so I am trying to do my best.
I know if Edmund (my son) receives the CI he will lose all the hearing he does have so I know why he wants to make sure, but he mainly focused on his co-workers results and ignored the rest... It has me worried.
Click to expand...

Hi!

We could use some clarification as to the discrepancy in his hearing loss. You first stated he is HOH. Then you said he has a severe/profound loss. (That isn't HOH. He would definitely need HAs or a CI if he is in that loss range.) Then, you said he was not a candidate. I don't want to come across the wrong way here, I am not disputing at all what you've said -- perhaps you don't know what DB losses fall in the HOH and deaf ranges?

My thought is that you should take him to another audiologist, one that is neutral and not a part of all of that you have been doing, and get an unbiased result.

The whole refusal of implantation because of teaching ASL? Find yourself another doctor, FAST. You can always start with ASL just to get started on communicating (language). Perhaps you will find he would indeed be a good candidate for a CI, or just HAs. (I wear HAs myself and have looked into a CI, so I'm neither endorsing or nay-saying either. I'm unbiased here.)
 
ProudMommy89 said:
Oh, I didn't even know I put it in bold....Sorry. I really new to this.

I spoke to the Doctor and told him I needed to at least teach him some words now that he's a bit older. Like milk, dog, thirsty, etc.

Replace scream with shout.(I was became frustrated thinking about it ) I know it won't make him hear more but it's the only thing that makes him react to the sound of my voice.
Click to expand...

My daughter is 7 and she is Deaf, she has a severe loss (or rather, did before her implants). Her loss was 60 sloping to 85 db. What is your son's?

I think that ASL is always a good idea. It gives your child the ability to understand an communicate, no matter what he can hear. The quicker you begin to learn and he does, the quicker you will be able to communicate.

Why did they say that he wasn't a candidate? (My daughter has bilateral implants.)
 
Bare with me. I've been trying to learn all I can since I learned of my son's hearing loss. It's a lot of information to retain in just a few short months. According to his audiologist report, it states that he has bilateral severe to profound hearing loss. Audiologist says he is a candidate for CI. Also states an aided speech awareness threshold was obtained at moderate-severe levels. Cochlear is recommended.

The ENT, Balkany, also the one who does the CI, stated he was not a candidate.
From what I can read from his hearing test, it says the SAT, the sound field test is 75 DB and with his aids its 55DB. At the ENT office sound field results with aids were at 40DB.

This is still a bit Greek to me. If someone can explain this a bit more, I'd appreciate it.

As for the HOH and deaf ranges, I read different things so I become confused.
 
There are other places that allow you to do both Spoken and ASL. You'll have to research it.
 
faire_jour said:
My daughter is 7 and she is Deaf, she has a severe loss (or rather, did before her implants). Her loss was 60 sloping to 85 db. What is your son's?

I think that ASL is always a good idea. It gives your child the ability to understand an communicate, no matter what he can hear. The quicker you begin to learn and he does, the quicker you will be able to communicate.

Why did they say that he wasn't a candidate? (My daughter has bilateral implants.)
Click to expand...

His seems to be 75 to 90 db.
 
faire_jour said:
My daughter is 7 and she is Deaf, she has a severe loss (or rather, did before her implants). Her loss was 60 sloping to 85 db. What is your son's?

I think that ASL is always a good idea. It gives your child the ability to understand an communicate, no matter what he can hear. The quicker you begin to learn and he does, the quicker you will be able to communicate.

Why did they say that he wasn't a candidate? (My daughter has bilateral implants.)
Click to expand...

If they got a 40 db, on a test, that is in the range of speech. That would be the reason for denial.
 
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ProudMommy89 said:
Bare with me. I've been trying to learn all I can since I learned of my son's hearing loss. It's a lot of information to retain in just a few short months. According to his audiologist report, it states that he has bilateral severe to profound hearing loss. Audiologist says he is a candidate for CI. Also states an aided speech awareness threshold was obtained at moderate-severe levels. Cochlear is recommended.

The ENT, Balkany, also the one who does the CI, stated he was not a candidate.
From what I can read from his hearing test, it says the SAT, the sound field test is 75 DB and with his aids its 55DB. At the ENT office sound field results with aids were at 40DB.

This is still a bit Greek to me. If someone can explain this a bit more, I'd appreciate it.

As for the HOH and deaf ranges, I read different things so I become confused.
Click to expand...

Hearing at 40db is why denial.
 
faire_jour said:
Why did they say that he wasn't a candidate? (My daughter has bilateral implants.)
Click to expand...

He told us since he has a bit of hearing with the aids, he doesn't think a CI is necessary. Like I said he believes AVT is all that's needed and in a few months if it still doesn't help, then he will consider CI. Which I understand, but I thought it was better CI to be given at a younger age??? My son has a speech therapist already as well as a deaf mentor who come weekly.
 
But the aided test with his audiologist stated it was 55db aided.

Does that mean AVT would help?!!! :)
 
AlleyCat said:
The whole refusal of implantation because of teaching ASL? Find yourself another doctor, FAST. You can always start with ASL just to get started on communicating (language). Perhaps you will find he would indeed be a good candidate for a CI, or just HAs. (I wear HAs myself and have looked into a CI, so I'm neither endorsing or nay-saying either. I'm unbiased here.)
Click to expand...

I completely forgot that if you don't do a followup to specific therapy, they are more likely to deny you. Which I think is stupid and parents should have an option to do both/
 
ProudMommy89 said:
Bare with me. I've been trying to learn all I can since I learned of my son's hearing loss. It's a lot of information to retain in just a few short months. According to his audiologist report, it states that he has bilateral severe to profound hearing loss. Audiologist says he is a candidate for CI. Also states an aided speech awareness threshold was obtained at moderate-severe levels. Cochlear is recommended.

The ENT, Balkany, also the one who does the CI, stated he was not a candidate.
From what I can read from his hearing test, it says the SAT, the sound field test is 75 DB and with his aids its 55DB. At the ENT office sound field results with aids were at 40DB.

This is still a bit Greek to me. If someone can explain this a bit more, I'd appreciate it.

As for the HOH and deaf ranges, I read different things so I become confused.
Click to expand...

55 db is pretty loud for an SRT. My daughter's is 15 db with her implant. The SRT is the quietest he can recognize speech. 55 db is conversational level, that means that he hears regular speech as a tiny whisper, the quietest he can hear, and that is which his aids. (40 was with aids too?)

I would do follow up testing, see who is right. Even at 40 db, that isn't good enough to be able to access all the sounds of speech.
 
Have you got IEP yet? He need a accessible language (that don't require you to raise your voice) while you figure all this out.
 
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