Re: Hearing loss (mis)diagnosis

[Guest guest]

Rita-

I don't know anything about the hearing issues you are facing. I look

forward to hearing other responses. I know that some CHARGErs have lost

hearing over time but I thought that was mostly due to infections and the

like -- not due to a condition they had since birth. I've always thought

our kids were more at risk for further hearing and vision loss just based on

all the malformations and health issues of their eyes and ears, but I've

never thought that progressive hearing loss was a given -- I never really

even thought of it as likely -- just more possible than in a typical child.

Gosh -- does that make sense? Anyway- If you attend the next HANDLE

training, share your thoughts. And let us know how things go on the hearing

stuff.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

[Guest guest]

Rita-

I don't know anything about the hearing issues you are facing. I look

forward to hearing other responses. I know that some CHARGErs have lost

hearing over time but I thought that was mostly due to infections and the

like -- not due to a condition they had since birth. I've always thought

our kids were more at risk for further hearing and vision loss just based on

all the malformations and health issues of their eyes and ears, but I've

never thought that progressive hearing loss was a given -- I never really

even thought of it as likely -- just more possible than in a typical child.

Gosh -- does that make sense? Anyway- If you attend the next HANDLE

training, share your thoughts. And let us know how things go on the hearing

stuff.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

[Guest guest]

Rita-

I don't know anything about the hearing issues you are facing. I look

forward to hearing other responses. I know that some CHARGErs have lost

hearing over time but I thought that was mostly due to infections and the

like -- not due to a condition they had since birth. I've always thought

our kids were more at risk for further hearing and vision loss just based on

all the malformations and health issues of their eyes and ears, but I've

never thought that progressive hearing loss was a given -- I never really

even thought of it as likely -- just more possible than in a typical child.

Gosh -- does that make sense? Anyway- If you attend the next HANDLE

training, share your thoughts. And let us know how things go on the hearing

stuff.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

[Guest guest]

Rita,

As a Teacher of Deaf and Deafblind, my understanding is that a

sensori-neural hearing loss is not necessarily progressive; however,

hearing deterioration can result from the many doses of antibiotics

that children with CHARGE can often take over time, from recurrent

ear infections and other health issues...

I am not aware that deterioration of hearing is a symptom of CHARGE,

but like any hearing loss, some losses will remain stable while

others may result in further loss of hearing due to individual

circumstances...that is why regular audiological reviews are

important.

Sharon from West Oz

>Rita-

>I don't know anything about the hearing issues you are facing. I look

>forward to hearing other responses. I know that some CHARGErs have lost

>hearing over time but I thought that was mostly due to infections and the

>like -- not due to a condition they had since birth. I've always thought

>our kids were more at risk for further hearing and vision loss just based on

>all the malformations and health issues of their eyes and ears, but I've

>never thought that progressive hearing loss was a given -- I never really

>even thought of it as likely -- just more possible than in a typical child.

>

>Gosh -- does that make sense? Anyway- If you attend the next HANDLE

>training, share your thoughts. And let us know how things go on the hearing

>stuff.

>

>Michele W

>mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

>

>

>

>

>CHARGE SYNDROME LISTSERV PHOTO PAGE:

>http://www.imagestation.com/album/?id=2117043995

>

>Membership of this email support group does not constitute

>membership in the CHARGE Syndrome Foundation; for information about

>the CHARGE Syndrome

>Foundation or to become a member (and get the newsletter),

>please contact marion@... or visit

>the web site at http://www.chargesyndrome.org

>

>8th International

>CHARGE Syndrome Conference, July, 2007. Information will be

>available at www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

Rita,

As a Teacher of Deaf and Deafblind, my understanding is that a

sensori-neural hearing loss is not necessarily progressive; however,

hearing deterioration can result from the many doses of antibiotics

that children with CHARGE can often take over time, from recurrent

ear infections and other health issues...

I am not aware that deterioration of hearing is a symptom of CHARGE,

but like any hearing loss, some losses will remain stable while

others may result in further loss of hearing due to individual

circumstances...that is why regular audiological reviews are

important.

Sharon from West Oz

>Rita-

>I don't know anything about the hearing issues you are facing. I look

>forward to hearing other responses. I know that some CHARGErs have lost

>hearing over time but I thought that was mostly due to infections and the

>like -- not due to a condition they had since birth. I've always thought

>our kids were more at risk for further hearing and vision loss just based on

>all the malformations and health issues of their eyes and ears, but I've

>never thought that progressive hearing loss was a given -- I never really

>even thought of it as likely -- just more possible than in a typical child.

>

>Gosh -- does that make sense? Anyway- If you attend the next HANDLE

>training, share your thoughts. And let us know how things go on the hearing

>stuff.

>

>Michele W

>mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

>

>

>

>

>CHARGE SYNDROME LISTSERV PHOTO PAGE:

>http://www.imagestation.com/album/?id=2117043995

>

>Membership of this email support group does not constitute

>membership in the CHARGE Syndrome Foundation; for information about

>the CHARGE Syndrome

>Foundation or to become a member (and get the newsletter),

>please contact marion@... or visit

>the web site at http://www.chargesyndrome.org

>

>8th International

>CHARGE Syndrome Conference, July, 2007. Information will be

>available at www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

Rita,

As a Teacher of Deaf and Deafblind, my understanding is that a

sensori-neural hearing loss is not necessarily progressive; however,

hearing deterioration can result from the many doses of antibiotics

that children with CHARGE can often take over time, from recurrent

ear infections and other health issues...

I am not aware that deterioration of hearing is a symptom of CHARGE,

but like any hearing loss, some losses will remain stable while

others may result in further loss of hearing due to individual

circumstances...that is why regular audiological reviews are

important.

Sharon from West Oz

>Rita-

>I don't know anything about the hearing issues you are facing. I look

>forward to hearing other responses. I know that some CHARGErs have lost

>hearing over time but I thought that was mostly due to infections and the

>like -- not due to a condition they had since birth. I've always thought

>our kids were more at risk for further hearing and vision loss just based on

>all the malformations and health issues of their eyes and ears, but I've

>never thought that progressive hearing loss was a given -- I never really

>even thought of it as likely -- just more possible than in a typical child.

>

>Gosh -- does that make sense? Anyway- If you attend the next HANDLE

>training, share your thoughts. And let us know how things go on the hearing

>stuff.

>

>Michele W

>mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

>

>

>

>

>CHARGE SYNDROME LISTSERV PHOTO PAGE:

>http://www.imagestation.com/album/?id=2117043995

>

>Membership of this email support group does not constitute

>membership in the CHARGE Syndrome Foundation; for information about

>the CHARGE Syndrome

>Foundation or to become a member (and get the newsletter),

>please contact marion@... or visit

>the web site at http://www.chargesyndrome.org

>

>8th International

>CHARGE Syndrome Conference, July, 2007. Information will be

>available at www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

sharron i agree with you ive got sensoriey neural and bone things and mines

mainly due to antibiotics hugs ellen

>

> Rita,

> As a Teacher of Deaf and Deafblind, my understanding is that a

> sensori-neural hearing loss is not necessarily progressive; however,

> hearing deterioration can result from the many doses of antibiotics

> that children with CHARGE can often take over time, from recurrent

> ear infections and other health issues...

> I am not aware that deterioration of hearing is a symptom of CHARGE,

> but like any hearing loss, some losses will remain stable while

> others may result in further loss of hearing due to individual

> circumstances...that is why regular audiological reviews are

> important.

> Sharon from West Oz

>

> >Rita-

> >I don't know anything about the hearing issues you are facing. I look

> >forward to hearing other responses. I know that some CHARGErs have lost

> >hearing over time but I thought that was mostly due to infections and the

> >like -- not due to a condition they had since birth. I've always thought

> >our kids were more at risk for further hearing and vision loss just based

> on

> >all the malformations and health issues of their eyes and ears, but I've

> >never thought that progressive hearing loss was a given -- I never really

> >even thought of it as likely -- just more possible than in a typical

> child.

> >

> >Gosh -- does that make sense? Anyway- If you attend the next HANDLE

> >training, share your thoughts. And let us know how things go on the

> hearing

> >stuff.

> >

> >Michele W

> >mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

> >

> >

> >

> >

> >CHARGE SYNDROME LISTSERV PHOTO PAGE:

> >http://www.imagestation.com/album/?id=2117043995

> >

> >Membership of this email support group does not constitute

> >membership in the CHARGE Syndrome Foundation; for information about

> >the CHARGE Syndrome

> >Foundation or to become a member (and get the newsletter),

> >please contact marion@... or visit

> >the web site at http://www.chargesyndrome.org

> >

> >8th International

> >CHARGE Syndrome Conference, July, 2007. Information will be

> >available at www.chargesyndrome.org or by calling 1-.

> >

[Guest guest]

sharron i agree with you ive got sensoriey neural and bone things and mines

mainly due to antibiotics hugs ellen

>

> Rita,

> As a Teacher of Deaf and Deafblind, my understanding is that a

> sensori-neural hearing loss is not necessarily progressive; however,

> hearing deterioration can result from the many doses of antibiotics

> that children with CHARGE can often take over time, from recurrent

> ear infections and other health issues...

> I am not aware that deterioration of hearing is a symptom of CHARGE,

> but like any hearing loss, some losses will remain stable while

> others may result in further loss of hearing due to individual

> circumstances...that is why regular audiological reviews are

> important.

> Sharon from West Oz

>

> >Rita-

> >I don't know anything about the hearing issues you are facing. I look

> >forward to hearing other responses. I know that some CHARGErs have lost

> >hearing over time but I thought that was mostly due to infections and the

> >like -- not due to a condition they had since birth. I've always thought

> >our kids were more at risk for further hearing and vision loss just based

> on

> >all the malformations and health issues of their eyes and ears, but I've

> >never thought that progressive hearing loss was a given -- I never really

> >even thought of it as likely -- just more possible than in a typical

> child.

> >

> >Gosh -- does that make sense? Anyway- If you attend the next HANDLE

> >training, share your thoughts. And let us know how things go on the

> hearing

> >stuff.

> >

> >Michele W

> >mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

> >

> >

> >

> >

> >CHARGE SYNDROME LISTSERV PHOTO PAGE:

> >http://www.imagestation.com/album/?id=2117043995

> >

> >Membership of this email support group does not constitute

> >membership in the CHARGE Syndrome Foundation; for information about

> >the CHARGE Syndrome

> >Foundation or to become a member (and get the newsletter),

> >please contact marion@... or visit

> >the web site at http://www.chargesyndrome.org

> >

> >8th International

> >CHARGE Syndrome Conference, July, 2007. Information will be

> >available at www.chargesyndrome.org or by calling 1-.

> >

[Guest guest]

sharron i agree with you ive got sensoriey neural and bone things and mines

mainly due to antibiotics hugs ellen

>

> Rita,

> As a Teacher of Deaf and Deafblind, my understanding is that a

> sensori-neural hearing loss is not necessarily progressive; however,

> hearing deterioration can result from the many doses of antibiotics

> that children with CHARGE can often take over time, from recurrent

> ear infections and other health issues...

> I am not aware that deterioration of hearing is a symptom of CHARGE,

> but like any hearing loss, some losses will remain stable while

> others may result in further loss of hearing due to individual

> circumstances...that is why regular audiological reviews are

> important.

> Sharon from West Oz

>

> >Rita-

> >I don't know anything about the hearing issues you are facing. I look

> >forward to hearing other responses. I know that some CHARGErs have lost

> >hearing over time but I thought that was mostly due to infections and the

> >like -- not due to a condition they had since birth. I've always thought

> >our kids were more at risk for further hearing and vision loss just based

> on

> >all the malformations and health issues of their eyes and ears, but I've

> >never thought that progressive hearing loss was a given -- I never really

> >even thought of it as likely -- just more possible than in a typical

> child.

> >

> >Gosh -- does that make sense? Anyway- If you attend the next HANDLE

> >training, share your thoughts. And let us know how things go on the

> hearing

> >stuff.

> >

> >Michele W

> >mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

> >

> >

> >

> >

> >CHARGE SYNDROME LISTSERV PHOTO PAGE:

> >http://www.imagestation.com/album/?id=2117043995

> >

> >Membership of this email support group does not constitute

> >membership in the CHARGE Syndrome Foundation; for information about

> >the CHARGE Syndrome

> >Foundation or to become a member (and get the newsletter),

> >please contact marion@... or visit

> >the web site at http://www.chargesyndrome.org

> >

> >8th International

> >CHARGE Syndrome Conference, July, 2007. Information will be

> >available at www.chargesyndrome.org or by calling 1-.

> >

[Guest guest]

My daughter was not any antibiotic till recently (for her ear infection and

myringotomy procedure.)

Hopefully we dont have to put her one any more antibiotics.

Sharon, thanks for the info. i am hoping that the level of loss just stays

the same as it is now.

Michele. Will definitely keep you all posted about her condition.

Her ENT suggested that we keep testing her hearing every three months.

Also we take her to an auditory verbal therapist every two weeks. and that

lady is fantastic. may she will also know if her condition gets worse.

Ellen, can you please elaborate on bone things and antibiotics. that kinds

of antibiotics were given to you and why.

Thanks

Rita

>

> sharron i agree with you ive got sensoriey neural and bone things and

> mines

> mainly due to antibiotics hugs ellen

>

>

> >

> > Rita,

> > As a Teacher of Deaf and Deafblind, my understanding is that a

> > sensori-neural hearing loss is not necessarily progressive; however,

> > hearing deterioration can result from the many doses of antibiotics

> > that children with CHARGE can often take over time, from recurrent

> > ear infections and other health issues...

> > I am not aware that deterioration of hearing is a symptom of CHARGE,

> > but like any hearing loss, some losses will remain stable while

> > others may result in further loss of hearing due to individual

> > circumstances...that is why regular audiological reviews are

> > important.

> > Sharon from West Oz

> >

> > >Rita-

> > >I don't know anything about the hearing issues you are facing. I look

> > >forward to hearing other responses. I know that some CHARGErs have

> lost

> > >hearing over time but I thought that was mostly due to infections and

> the

> > >like -- not due to a condition they had since birth. I've always

> thought

> > >our kids were more at risk for further hearing and vision loss just

> based

> > on

> > >all the malformations and health issues of their eyes and ears, but

> I've

> > >never thought that progressive hearing loss was a given -- I never

> really

> > >even thought of it as likely -- just more possible than in a typical

> > child.

> > >

> > >Gosh -- does that make sense? Anyway- If you attend the next HANDLE

> > >training, share your thoughts. And let us know how things go on the

> > hearing

> > >stuff.

> > >

> > >Michele W

> > >mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

> > >

> > >

> > >

> > >

> > >CHARGE SYNDROME LISTSERV PHOTO PAGE:

> > >http://www.imagestation.com/album/?id=2117043995

> > >

> > >Membership of this email support group does not constitute

> > >membership in the CHARGE Syndrome Foundation; for information about

> > >the CHARGE Syndrome

> > >Foundation or to become a member (and get the newsletter),

> > >please contact marion@... or visit

> > >the web site at http://www.chargesyndrome.org

> > >

> > >8th International

> > >CHARGE Syndrome Conference, July, 2007. Information will be

> > >available at www.chargesyndrome.org or by calling 1-.

> > >

[Guest guest]

Patty has a progressive hearing loss which is totally due to her having

chronic ear infections. That is a conductive loss. The infections can go in

and

do damage to the nerves if not caught, but we have held things off. I haven't

heard of others loosing their sensorineural hearing due to infections.

Wishing you the best.

Bonnie, Mom to a 23, Patty CHARGE 21, and wife to

[Guest guest]

Patty has a progressive hearing loss which is totally due to her having

chronic ear infections. That is a conductive loss. The infections can go in

and

do damage to the nerves if not caught, but we have held things off. I haven't

heard of others loosing their sensorineural hearing due to infections.

Wishing you the best.

Bonnie, Mom to a 23, Patty CHARGE 21, and wife to

[Guest guest]

Patty has a progressive hearing loss which is totally due to her having

chronic ear infections. That is a conductive loss. The infections can go in

and

do damage to the nerves if not caught, but we have held things off. I haven't

heard of others loosing their sensorineural hearing due to infections.

Wishing you the best.

Bonnie, Mom to a 23, Patty CHARGE 21, and wife to

[Guest guest]

,

When Patty was little she wore a fm unit where there were two boxes on

harness/holster at her chest with wires that went to her ear molds. Boy am I

feeling old. She then went to a used FM system for about 7 years and finally

got a

cool one by the end of school. But as she graduated the school kept it. Have

I ever shared how nice they were? Bet you can tell my opinion.

At home she always had regular hearing aids, phonic ear with her last pair

being really state of the art.

We have done all we could and she still struggles with the infections. She

hasn't had her aid in for three days now due to tons of drainage. That usually

happens at this time of year.

We have decided to go the bone conduction aid (headband type) and then

hopefully a baha if that works. Keep your fingers crossed.

I am keeping an eye on Kennedy to see how she's been doing. Keep sharing.

Bonnie, Mom to a 23, Patty CHARGE 21, and wife to

[Guest guest]

,

When Patty was little she wore a fm unit where there were two boxes on

harness/holster at her chest with wires that went to her ear molds. Boy am I

feeling old. She then went to a used FM system for about 7 years and finally

got a

cool one by the end of school. But as she graduated the school kept it. Have

I ever shared how nice they were? Bet you can tell my opinion.

At home she always had regular hearing aids, phonic ear with her last pair

being really state of the art.

We have done all we could and she still struggles with the infections. She

hasn't had her aid in for three days now due to tons of drainage. That usually

happens at this time of year.

We have decided to go the bone conduction aid (headband type) and then

hopefully a baha if that works. Keep your fingers crossed.

I am keeping an eye on Kennedy to see how she's been doing. Keep sharing.

Bonnie, Mom to a 23, Patty CHARGE 21, and wife to

[Guest guest]

Bonnie,

What type of hearing amplification devices does Patty use? Was it you that

said you were looking into BAHA?

It sure sounds like she may be a good candidate.

>

> Patty has a progressive hearing loss which is totally due to her having

> chronic ear infections. That is a conductive loss. The infections can go

> in and

> do damage to the nerves if not caught, but we have held things off. I

> haven't

> heard of others loosing their sensorineural hearing due to infections.

>

> Wishing you the best.

>

>

> Bonnie, Mom to a 23, Patty CHARGE 21, and wife to

>

>

>

[Guest guest]

Bonnie,

What type of hearing amplification devices does Patty use? Was it you that

said you were looking into BAHA?

It sure sounds like she may be a good candidate.

>

> Patty has a progressive hearing loss which is totally due to her having

> chronic ear infections. That is a conductive loss. The infections can go

> in and

> do damage to the nerves if not caught, but we have held things off. I

> haven't

> heard of others loosing their sensorineural hearing due to infections.

>

> Wishing you the best.

>

>

> Bonnie, Mom to a 23, Patty CHARGE 21, and wife to

>

>

>

[Guest guest]

Bonnie-

Does Patty take allergy meds this time of year? We are finding that Aubrie

needs it or she gets very congested with sinus and ear infections following.

Just wondering. If/when you try the bone conduction and/or baha, be sure to

let us know how it goes.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

[Guest guest]

Bonnie-

Does Patty take allergy meds this time of year? We are finding that Aubrie

needs it or she gets very congested with sinus and ear infections following.

Just wondering. If/when you try the bone conduction and/or baha, be sure to

let us know how it goes.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

[Guest guest]

Bonnie-

Does Patty take allergy meds this time of year? We are finding that Aubrie

needs it or she gets very congested with sinus and ear infections following.

Just wondering. If/when you try the bone conduction and/or baha, be sure to

let us know how it goes.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

[Guest guest]

,

Can I ask what type of allergy meds does Aubrie take and how old was she

when she started taking them?

(Also, did she ever have her adnoids removed? or have they ever posed any

problems for her. Apologies

if this was in an earlier post and I missed it)

(PS-I love the picture of Aubrie in her karate outfit belt!)

(mom to 23months CHARGE, 5.5 years, wife to Pat)

New York

RE: Hearing loss (mis)diagnosis

> Bonnie-

> Does Patty take allergy meds this time of year? We are finding that

> Aubrie

> needs it or she gets very congested with sinus and ear infections

> following.

> Just wondering. If/when you try the bone conduction and/or baha, be sure

> to

> let us know how it goes.

>

> Michele W

> mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

>

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> Membership of this email support group does not constitute membership in

> the CHARGE Syndrome Foundation; for information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org

>

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

,

Can I ask what type of allergy meds does Aubrie take and how old was she

when she started taking them?

(Also, did she ever have her adnoids removed? or have they ever posed any

problems for her. Apologies

if this was in an earlier post and I missed it)

(PS-I love the picture of Aubrie in her karate outfit belt!)

(mom to 23months CHARGE, 5.5 years, wife to Pat)

New York

RE: Hearing loss (mis)diagnosis

> Bonnie-

> Does Patty take allergy meds this time of year? We are finding that

> Aubrie

> needs it or she gets very congested with sinus and ear infections

> following.

> Just wondering. If/when you try the bone conduction and/or baha, be sure

> to

> let us know how it goes.

>

> Michele W

> mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

>

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> Membership of this email support group does not constitute membership in

> the CHARGE Syndrome Foundation; for information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org

>

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

Michele,

Yes, but they don't really work. Plus I make sure they don't interact with

her other meds. The thing that works the best for her are ear drops and just

keeping them as dry as possible. She also needs albuteral (an inhaler) often

during this time.

Bonnie, Mom to a 23, Patty CHARGE 21, and wife to

[Guest guest]

Michele,

Yes, but they don't really work. Plus I make sure they don't interact with

her other meds. The thing that works the best for her are ear drops and just

keeping them as dry as possible. She also needs albuteral (an inhaler) often

during this time.

Bonnie, Mom to a 23, Patty CHARGE 21, and wife to

[Guest guest]

Michele,

Yes, but they don't really work. Plus I make sure they don't interact with

her other meds. The thing that works the best for her are ear drops and just

keeping them as dry as possible. She also needs albuteral (an inhaler) often

during this time.

Bonnie, Mom to a 23, Patty CHARGE 21, and wife to