Why adults choose CI's for their children

[Jolie77]

Maybe we are veering a bit off topic and the discussion about bibi could continue in the thread http://www.alldeaf.com/deaf-education/44850-survey-bi-bi-programs-empirical-article.html

Mods, if its not to much trouble can you please move posts 603, 606, 607, 609, 610, and 612 through 619 to the thread mentioned above.

Thank you!!

It's no trouble at all and these posts has been moved to the thread mentioned above.

 

[rockdrummer]

Thank you Jolie!!

 

[vallee]

I have a question. In making the choice of CIs, how many parents found the cause for the hearing loss? I know Drew's parents know the cause. Did it make the decision easier or more difficult?

They are looking back into my own hearing history. Right now they are not sure the lost is from a childhood illness.

 

[john57]

I have a question. In making the choice of CIs, how many parents found the cause for the hearing loss? I know Drew's parents know the cause. Did it make the decision easier or more difficult?

They are looking back into my own hearing history. Right now they are not sure the lost is from a childhood illness.

None of my doctors knew what cause my hearing loss until I had a CAT scan of my head when going thru my CI approval process and found along a few things that my cochlea was small. It made my decision to get a CI more difficult. I had a few childhood illness but it was not much of a factor in my case.

 

[rockdrummer]

I have a question. In making the choice of CIs, how many parents found the cause for the hearing loss? I know Drew's parents know the cause. Did it make the decision easier or more difficult?

They are looking back into my own hearing history. Right now they are not sure the lost is from a childhood illness.

Great point. Finding the cause should be important because I believe depending on the cause, the CI might not work.

 

[LadySekhmet]

Great point. Finding the cause should be important because I believe depending on the cause, the CI might not work.

For what cause that CI won't work? Ossio issues can be easily seen through CAT scan and MRI, but what other causes?

To this day, we do not know WHY I am deaf. I'm just missing hair cells, maybe that's why I have very little hairs on my arms and legs. My mom had an easy birth with me. My half brother, through my father's side, is deaf as well. But he is MORE deaf than I am. HAs does not help him at all.

So, My father blamed it on drugs that he did for a while until he "sobered" up, and blamed himself for years. I didn't care. I'm deaf, I'll live with it. Not a big deal.

Having said this, I pretty curious though if I will pass it along to my children.

 

[jillio]

For what cause that CI won't work? Ossio issues can be easily seen through CAT scan and MRI, but what other causes?

To this day, we do not know WHY I am deaf. I'm just missing hair cells, maybe that's why I have very little hairs on my arms and legs. My mom had an easy birth with me. My half brother, through my father's side, is deaf as well. But he is MORE deaf than I am. HAs does not help him at all.

So, My father blamed it on drugs that he did for a while until he "sobered" up, and blamed himself for years. I didn't care. I'm deaf, I'll live with it. Not a big deal.

Having said this, I pretty curious though if I will pass it along to my children.

Have they done any genetic testing for you, Lady? With you half brother also having a hearing loss, it is quite possible it is genetic from your father's side.

 

[LadySekhmet]

Have they done any genetic testing for you, Lady? With you half brother also having a hearing loss, it is quite possible it is genetic from your father's side.

Do you know how expensive those tests are?

I probably would consider it when I start to consider children, however, my fiance and I do not give a hoot's ass if our child is deaf or not. I probably will, but I'm in no rush.

I used to always blame my older brother for making me deaf by putting air horn on my ear.

 

[AlleyCat]

Finding the cause should be important because I believe depending on the cause, the CI might not work.

That's a good point too. I never thought of that. It is believed I was born deaf since my parents suspected it practically from day one (and this is before the days of at-birth hearing testing,) and I had no childhood illnesses. There is no family history of deafness whatsoever (and I have an older sister who is hearing; ) the only thing we wonder is that when mom was 3 months pregnant with me, she had a bad case of the flu. But it's worth mentioning to the doctors, I'm sure.

 

[jillio]

Do you know how expensive those tests are?

I probably would consider it when I start to consider children, however, my fiance and I do not give a hoot's ass if our child is deaf or not. I probably will, but I'm in no rush.

I used to always blame my older brother for making me deaf by putting air horn on my ear.

Yeah, I realize they are expensive, and if you are not concerned about whether your child is deaf or not, then I don't see the tests as necessary. I just mentioned it because you said you were curious.

 

[jillio]

That's a good point too. I never thought of that. It is believed I was born deaf since my parents suspected it practically from day one (and this is before the days of at-birth hearing testing,) and I had no childhood illnesses. There is no family history of deafness whatsoever (and I have an older sister who is hearing; ) the only thing we wonder is that when mom was 3 months pregnant with me, she had a bad case of the flu. But it's worth mentioning to the doctors, I'm sure.

May have been CMV. It causes flu like symptoms, and most people will attribute it to a bad case of the flu. It isn't harmful, except in the case of a pregnant woman. Deafness, blindness, and mental retardation are the most common consequences, with congenital deafness being the most frequent.

 

[faire_jour]

My girl got some ototoxic drugs in the NICU. They saved her life, but ruined her hearing. I say, better a deaf baby than a dead one.

-Melissa Jensen

Mom to Miss Kat- 5, bilateral progressive loss, just became severe-profound (will be implanted 10-10-08 with a right side AB, activation 11-17-08)

Miss Kat's Deaf journey

 

[jillio]

My girl got some ototoxic drugs in the NICU. They saved her life, but ruined her hearing. I say, better a deaf baby than a dead one.

-Melissa Jensen

Mom to Miss Kat- 5, bilateral progressive loss, just became severe-profound (will be implanted 10-10-08 with a right side AB, activation 11-17-08)

Miss Kat's Deaf journey

Very true!

 

[Oceanbreeze]

My girl got some ototoxic drugs in the NICU. They saved her life, but ruined her hearing. I say, better a deaf baby than a dead one.
-Melissa Jensen

Mom to Miss Kat- 5, bilateral progressive loss, just became severe-profound (will be implanted 10-10-08 with a right side AB, activation 11-17-08)

Miss Kat's Deaf journey

Deafness can be dealt with, but death cannot.

 

[Buffalo]

May have been CMV. It causes flu like symptoms, and most people will attribute it to a bad case of the flu. It isn't harmful, except in the case of a pregnant woman. Deafness, blindness, and mental retardation are the most common consequences, with congenital deafness being the most frequent.

Could AlleyCat be tested for CMV so she can either rules CMV out or finds CMV is the reason for his/her deafness.

 

[jillio]

Could AlleyCat be tested for CMV so she can either rules CMV out or finds CMV is the reason for his/her deafness.

A blood test could be done to determine if she carries CMV antibodies. However, since she is now an adult, it couldnot be determined for certain that she hasn't been exposed at another time in her life, thus developing the antibodies. On the other hand, if she is determined to be carrying the CMV antibodies, and her hearing loss follows a specific pattern, it could be a probable diagnosis. CMV deafness typically follows a pattern similar to ruebella deafness, and is often progressive.

If the blood test reveals no antibodies, then CMV could be ruled out as the cause.

 

[vallee]

Great point. Finding the cause should be important because I believe depending on the cause, the CI might not work.

It also might assist in making the decision for CI easier. For example, if gene testing and find out the cause is Connexin 26 gene, then the parents know the lost is progressive and they might chose CI earlier instead of later.

My hearing lose has always stated it was from childhood illness, rheumatic fever. My mother and her sister had gene testing for breast cancer and found they tested positive for Ashkenazi Jews. It also can contains the gene for Connexin 26. They say it would be a good chance that I carry the gene. My doctor and I are exploring the possibility, but testing is not cheap. I already have my child and she is biracial and hearing. I'm not sure if knowing now really makes a difference to me.

(Side note only my aunt has the breast cancer gene, not my mom. Even though my mom has stage 3 breast cancer.)

 

[AlleyCat]

A blood test could be done to determine if she carries CMV antibodies. However, since she is now an adult, it couldnot be determined for certain that she hasn't been exposed at another time in her life, thus developing the antibodies. On the other hand, if she is determined to be carrying the CMV antibodies, and her hearing loss follows a specific pattern, it could be a probable diagnosis. CMV deafness typically follows a pattern similar to ruebella deafness, and is often progressive.

If the blood test reveals no antibodies, then CMV could be ruled out as the cause.

I have never been tested for this, but it's worth looking into. I talked to my mom about this yesterday. She doesn't think she's ever been tested for CMV. As far as being progressive .. I have looked into this online and I'm not really seeing that. But anyway, as of right now my hearing loss doesn't seem to be progressive. I was born at about 85 db loss, was in a car accident at age 4 and hearing was retested immediately after, and it had dropped to about 95-100 db, and I've stayed there pretty much ever since. Only about 5-10 db loss more over 34 more years after (I'm now at 100-105.) Which could be contributed to age as well.

 

[jillio]

I have never been tested for this, but it's worth looking into. I talked to my mom about this yesterday. She doesn't think she's ever been tested for CMV. As far as being progressive .. I have looked into this online and I'm not really seeing that. But anyway, as of right now my hearing loss doesn't seem to be progressive. I was born at about 85 db loss, was in a car accident at age 4 and hearing was retested immediately after, and it had dropped to about 95-100 db, and I've stayed there pretty much ever since. Only about 5-10 db loss more over 34 more years after (I'm now at 100-105.) Which could be contributed to age as well.

Its a very simple blood test, and it would be worthwhile for you to know. The progression is usually in early childhood...for instance the pattern you described of an 85dB loss at birth that gradually increased until age 4. A lot ov CMV kids are diagnosed late, because they don't routinely test pregnant women for exposure, and the newborns often don't exhibit symptoms of hearing loss due to the progresssiveness. Until they reach the age of 2 or so, the parent or the pediatrician don't see any clues. Then the loss becomes more severe, the child fails to develop language properly, etc. Also, because they are born with a lesser loss that progresses the first few years of their life, they gradually adapt and develop skills that, in effect, hide the fact that they aren't hearing well. Once the child goes through the early progressive stage, they will normally stabilize in their loss.

If you are interested in CMV deafness, I can refer you to some sources of information. My son has CMV deafness. I was one of the lucky ones who knew I was exposed during pregnancy, so my son was red-flagged at birth, and checked for elevated titers, so we knew what to watch for with his hearing loss. There is another member of this board, as well, that has CMV deafness.

 

[AlleyCat]

Its a very simple blood test, and it would be worthwhile for you to know. The progression is usually in early childhood...for instance the pattern you described of an 85dB loss at birth that gradually increased until age 4. A lot ov CMV kids are diagnosed late, because they don't routinely test pregnant women for exposure, and the newborns often don't exhibit symptoms of hearing loss due to the progresssiveness. Until they reach the age of 2 or so, the parent or the pediatrician don't see any clues. Then the loss becomes more severe, the child fails to develop language properly, etc. Also, because they are born with a lesser loss that progresses the first few years of their life, they gradually adapt and develop skills that, in effect, hide the fact that they aren't hearing well. Once the child goes through the early progressive stage, they will normally stabilize in their loss.

If you are interested in CMV deafness, I can refer you to some sources of information. My son has CMV deafness. I was one of the lucky ones who knew I was exposed during pregnancy, so my son was red-flagged at birth, and checked for elevated titers, so we knew what to watch for with his hearing loss. There is another member of this board, as well, that has CMV deafness.

I had had my hearing checked frequently up until that car accident at age 4, and it had remained at about 85 db. The drop to 95-100 was detected immediately after the car accident ... However, I learned something new from Mom when talking to her yesterday. I had previously thought my parents had suspected right off the bat that I was deaf, but Mom corrected me on that and said no, I was closer to 12 months old. That was news to me. She said it was apparent at 12 months that I was not communicating/responding at the same level as my older sister, so that raised a red flag. Up until that point they had thought I was just not paying attention, etc., so now I'm uncertain about whether I was actually born deaf or if this happened in the months following birth.