Re: underdeveloped brain due to partial deafness??

[Guest guest]

I don't know who told you that, but I don't believe that it works that

way at all from what I have read about the brain. If it worked that

way, then anyone who was deaf would have both sides of the brain

underdeveloped. That just does not make sense. Just because one part

of the body did not develop, does not mean that the opposing part of the

brain is underdeveloped. That is like saying a child born without a

right arm will have an underdeveloped left brain. I just don't get how

they came up with that explanation at all. Of course, if your son has

had some MRIs or something that would show some kind of physical

evidence for this, then maybe I might listen to them a little bit.

Oh, and I am currently reading a book about left handers and it talks

about the fact that not everyone's brain has emotion/self control on the

right side and logic on the other, for example. So, it is irresponsible

to tell you that in any case.

Who was trying to tell you this anyway? I really don't think anyone

knows enough about the brain to make some kind of statement like that.

in Manassas, VA

> Hi. My 8yo son is HOH due to no ear canal on left side

> (microtia/aural atresia). Was just told last week that since my son

> cannot hear outof his left ear, the right side of his brain(emotion,

> self-control)is underdeveloped. This explains why, when angry, he

> reacts like a 3yo (bites, pinches, etc.). " They " said that in

> contrast, the left side of his brain (logic) is extremely well-

> developed since his right ear has done all of the hearing for 8

> years. Okay, I'm " just " a mom who's trying to " fix " my son, so I

> don't know if what these guys have said about " left ear/right brain "

> is correct. Any ideas? He's a smart little guy with a sense of

> humor and a sweet side. But I'm confused as to what to do regarding

> his hearing (should we fix it with an operation or a BAHA or what).

> Any of this sound familiar? Thanks for reading.

>

>

>

> [A little history if it matters: We've had a behavior issue since he

> was 5yo...just getting worse (defiant, argumentative, etc.). *Took

> him to Shands Hospital (Nov'04)in Gainesville,FL, where he was dx

> with apd. They suggested an FM system which we purchased and used.

> *Had a neuropsych eval also at Shands (also Nov'04)where they said

> he has no other issues but adhd. They suggested we medicate him

> which we have not. Another specialist (Jun'04)also said he had adhd

> along with sensory integration dysfunction and anxiety. Just

> recently (Oct'05) had qeeg/brainmap where they said his brainmap

> shows he does NOT have adhd. Now going to " brainlab " where he gets

> listening therapy, biofeedback, and brainbuilder among other things.]

>

>

>

>

>

>

>

> All messages posted to this list are private and confidential. Each post is

the intellectual property of the author and therefore subject to copyright

restrictions.

>

[Guest guest]

Please take him to a psychiatrist who is familiar with depression in children

and have him evaluated for depression, bipolar disorder and the spectrum of

anxiety disorders. They mimic ADHD.

-------------- Original message --------------

> Hi. My 8yo son is HOH due to no ear canal on left side

> (microtia/aural atresia). Was just told last week that since my son

> cannot hear outof his left ear, the right side of his brain(emotion,

> self-control)is underdeveloped. This explains why, when angry, he

> reacts like a 3yo (bites, pinches, etc.). " They " said that in

> contrast, the left side of his brain (logic) is extremely well-

> developed since his right ear has done all of the hearing for 8

> years. Okay, I'm " just " a mom who's trying to " fix " my son, so I

> don't know if what these guys have said about " left ear/right brain "

> is correct. Any ideas? He's a smart little guy with a sense of

> humor and a sweet side. But I'm confused as to what to do regarding

> his hearing (should we fix it with an operation or a BAHA or what).

> Any of this sound familiar? Thanks for reading.

>

>

>

> [A little history if it matters: We've had a behavior issue since he

> was 5yo...just getting worse (defiant, argumentative, etc.). *Took

> him to Shands Hospital (Nov'04)in Gainesville,FL, where he was dx

> with apd. They suggested an FM system which we purchased and used.

> *Had a neuropsych eval also at Shands (also Nov'04)where they said

> he has no other issues but adhd. They suggested we medicate him

> which we have not. Another specialist (Jun'04)also said he had adhd

> along with sensory integration dysfunction and anxiety. Just

> recently (Oct'05) had qeeg/brainmap where they said his brainmap

> shows he does NOT have adhd. Now going to " brainlab " where he gets

> listening therapy, biofeedback, and brainbuilder among other things.]

>

>

>

>

>

>

>

> All messages posted to this list are private and confidential. Each post is

the

> intellectual property of the author and therefore subject to copyright

> restrictions.

>

[Guest guest]

I have no idea if this actually applies to you.. but I

have been reading this book called: Hold onto your

kids by gordon neufeld.

http://www.gordonneufeld.com/

first chapter of the book:

http://www.gordonneufeld.com/HOTYK_ChapterOne.pdf

http://www.audioacrobat.com/play/WjFm90VQ

I know nothing about adhd, etc, and this book isn't

really about those things specifically - but it is

about our connections with our kids and how our

culture in general promotes and parents unwittingly,

can disconnect with our kids.

So, this guy thinks that most " phycological " disorders

diagnosed in kids are really signs of this attachment

gone awry. (esp. add & adhd and other common ones)

attachment here means that your children use you the

parent as their compas point in life - as opposed to

using peers as a compass point.

I am finding this book earthshaking for my life. It

is helping me to appreciate my role in my children's

lives and to understand much of the pain I went

through in childhood/adolescence.

The " undeveloped brain " idea sounds kind of funny to

me - jeeze, most kids with one CI would have that and

all kids with microcia, right? I don't think that is

true! The human is so adaptable!!! (I guess the same

thing that caused the microcia could have caused the

brain underdevelopment?)

love to you!

--- semesky@... wrote:

> Please take him to a psychiatrist who is familiar

> with depression in children and have him evaluated

> for depression, bipolar disorder and the spectrum of

> anxiety disorders. They mimic ADHD.

>

>

> -------------- Original message --------------

>

>

> > Hi. My 8yo son is HOH due to no ear canal on left

> side

> > (microtia/aural atresia). Was just told last week

> that since my son

> > cannot hear outof his left ear, the right side of

> his brain(emotion,

> > self-control)is underdeveloped. This explains why,

> when angry, he

> > reacts like a 3yo (bites, pinches, etc.). " They "

> said that in

> > contrast, the left side of his brain (logic) is

> extremely well-

> > developed since his right ear has done all of the

> hearing for 8

> > years. Okay, I'm " just " a mom who's trying to

> " fix " my son, so I

> > don't know if what these guys have said about

> " left ear/right brain "

> > is correct. Any ideas? He's a smart little guy

> with a sense of

> > humor and a sweet side. But I'm confused as to

> what to do regarding

> > his hearing (should we fix it with an operation or

> a BAHA or what).

> > Any of this sound familiar? Thanks for reading.

> >

> >

> >

> > [A little history if it matters: We've had a

> behavior issue since he

> > was 5yo...just getting worse (defiant,

> argumentative, etc.). *Took

> > him to Shands Hospital (Nov'04)in Gainesville,FL,

> where he was dx

> > with apd. They suggested an FM system which we

> purchased and used.

> > *Had a neuropsych eval also at Shands (also

> Nov'04)where they said

> > he has no other issues but adhd. They suggested we

> medicate him

> > which we have not. Another specialist (Jun'04)also

> said he had adhd

> > along with sensory integration dysfunction and

> anxiety. Just

> > recently (Oct'05) had qeeg/brainmap where they

> said his brainmap

> > shows he does NOT have adhd. Now going to

> " brainlab " where he gets

> > listening therapy, biofeedback, and brainbuilder

> among other things.]

> >

> >

> >

> >

> >

> >

> >

> > All messages posted to this list are private and

> confidential. Each post is the

> > intellectual property of the author and therefore

> subject to copyright

> > restrictions.

> >

[Guest guest]

I have no idea if this actually applies to you.. but I

have been reading this book called: Hold onto your

kids by gordon neufeld.

http://www.gordonneufeld.com/

first chapter of the book:

http://www.gordonneufeld.com/HOTYK_ChapterOne.pdf

http://www.audioacrobat.com/play/WjFm90VQ

I know nothing about adhd, etc, and this book isn't

really about those things specifically - but it is

about our connections with our kids and how our

culture in general promotes and parents unwittingly,

can disconnect with our kids.

So, this guy thinks that most " phycological " disorders

diagnosed in kids are really signs of this attachment

gone awry. (esp. add & adhd and other common ones)

attachment here means that your children use you the

parent as their compas point in life - as opposed to

using peers as a compass point.

I am finding this book earthshaking for my life. It

is helping me to appreciate my role in my children's

lives and to understand much of the pain I went

through in childhood/adolescence.

The " undeveloped brain " idea sounds kind of funny to

me - jeeze, most kids with one CI would have that and

all kids with microcia, right? I don't think that is

true! The human is so adaptable!!! (I guess the same

thing that caused the microcia could have caused the

brain underdevelopment?)

love to you!

>

>

> > Hi. My 8yo son is HOH due to no ear canal on left

> side

> > (microtia/aural atresia). Was just told last week

> that since my son

> > cannot hear outof his left ear, the right side of

> his brain(emotion,

> > self-control)is underdeveloped. This explains why,

> when angry, he

> > reacts like a 3yo (bites, pinches, etc.). " They "

> said that in

> > contrast, the left side of his brain (logic) is

> extremely well-

> > developed since his right ear has done all of the

> hearing for 8

> > years. Okay, I'm " just " a mom who's trying to

> " fix " my son, so I

> > don't know if what these guys have said about

> " left ear/right brain "

> > is correct. Any ideas? He's a smart little guy

> with a sense of

> > humor and a sweet side. But I'm confused as to

> what to do regarding

> > his hearing (should we fix it with an operation or

> a BAHA or what).

> > Any of this sound familiar? Thanks for reading.

> >

> >

__________________________________________________

[Guest guest]

, who told you this?? Because normally both ears " connect' to the left

side of the brain which is where the auditory and language areas are. The left

ear is not normally " connected " to the right side of the brain. Are they basing

this on an MRI or fMRI or PET scan type of thing?? Some parts of the brain DO

develop with function or use, such as the homunculus which is more developed in

the areas of the fingers in string musicians. And I have read that when kids

don't have language input in great enough quantities at the right times that

rather than concentrating on the left side of the brain, the language centers

are divided between the left and right side of the brain, so the person can

learn language but it is never like it should be. in GA

Re: underdeveloped brain due to partial deafness??

>

>I don't know who told you that, but I don't believe that it works that

>way at all from what I have read about the brain. If it worked that

>way, then anyone who was deaf would have both sides of the brain

>underdeveloped. That just does not make sense. Just because one part

>of the body did not develop, does not mean that the opposing part of the

>brain is underdeveloped. That is like saying a child born without a

>right arm will have an underdeveloped left brain. I just don't get how

>they came up with that explanation at all. Of course, if your son has

>had some MRIs or something that would show some kind of physical

>evidence for this, then maybe I might listen to them a little bit.

>

>Oh, and I am currently reading a book about left handers and it talks

>about the fact that not everyone's brain has emotion/self control on the

>right side and logic on the other, for example. So, it is irresponsible

>to tell you that in any case.

>

>Who was trying to tell you this anyway? I really don't think anyone

>knows enough about the brain to make some kind of statement like that.

>

> in Manassas, VA

>

>

>> Hi. My 8yo son is HOH due to no ear canal on left side

>> (microtia/aural atresia). Was just told last week that since my son

>> cannot hear outof his left ear, the right side of his brain(emotion,

>> self-control)is underdeveloped. This explains why, when angry, he

>> reacts like a 3yo (bites, pinches, etc.). " They " said that in

>> contrast, the left side of his brain (logic) is extremely well-

>> developed since his right ear has done all of the hearing for 8

>> years. Okay, I'm " just " a mom who's trying to " fix " my son, so I

>> don't know if what these guys have said about " left ear/right brain "

>> is correct. Any ideas? He's a smart little guy with a sense of

>> humor and a sweet side. But I'm confused as to what to do regarding

>> his hearing (should we fix it with an operation or a BAHA or what).

>> Any of this sound familiar? Thanks for reading.

>>

>>

>>

>> [A little history if it matters: We've had a behavior issue since he

>> was 5yo...just getting worse (defiant, argumentative, etc.). *Took

>> him to Shands Hospital (Nov'04)in Gainesville,FL, where he was dx

>> with apd. They suggested an FM system which we purchased and used.

>> *Had a neuropsych eval also at Shands (also Nov'04)where they said

>> he has no other issues but adhd. They suggested we medicate him

>> which we have not. Another specialist (Jun'04)also said he had adhd

>> along with sensory integration dysfunction and anxiety. Just

>> recently (Oct'05) had qeeg/brainmap where they said his brainmap

>> shows he does NOT have adhd. Now going to " brainlab " where he gets

>> listening therapy, biofeedback, and brainbuilder among other things.]

>>

>>

>>

>>

>>

>>

>>

>> All messages posted to this list are private and confidential. Each post is

the intellectual property of the author and therefore subject to copyright

restrictions.

>>

[Guest guest]

,

For what it's worth, I haven't been told anything close to this - and my son

has a " dead " left ear due to SNL that has most likely been present since

birth (not diagnosed until age 5). Neither my husband or I have been told

anything close to this - and believe me, we've had our challenges with

. We have noticed that the behavioral issues tend to flare up when

he's getting ready for an " learning explosion " - especially when he's about

to make a breakthrough in a speech-related area (when he was younger, it was

vocabulary - now, it's concepts). Things would get progressively worse for

weeks, then he'd suddenly be saying all kinds of new words or using new

concepts he'd been working so hard to master, and we would have our happy

boy back again.

I know our experience probably doesn't help you at all - but I have a very

difficult time putting credence in what " they " are telling you. Have you

discussed this with your pediatrician at all? I tried looking at

boystownhospital.org (our local hospital specializing in hearing disorders)

and didn't find anything that would back up this theory.

Hugs to you,

Kris

Mom to (7 y.o., Profound/Complete SNL, Left Ear) and Ethan (Hearing)

_____

From: Listen-Up [mailto:Listen-Up ] On Behalf

Of

Sent: Monday, March 13, 2006 5:15 PM

To: Listen-Up

Subject: underdeveloped brain due to partial deafness??

Hi. My 8yo son is HOH due to no ear canal on left side

(microtia/aural atresia). Was just told last week that since my son

cannot hear outof his left ear, the right side of his brain(emotion,

self-control)is underdeveloped. This explains why, when angry, he

reacts like a 3yo (bites, pinches, etc.). " They " said that in

contrast, the left side of his brain (logic) is extremely well-

developed since his right ear has done all of the hearing for 8

years. Okay, I'm " just " a mom who's trying to " fix " my son, so I

don't know if what these guys have said about " left ear/right brain "

is correct. Any ideas? He's a smart little guy with a sense of

humor and a sweet side. But I'm confused as to what to do regarding

his hearing (should we fix it with an operation or a BAHA or what).

Any of this sound familiar? Thanks for reading.

[A little history if it matters: We've had a behavior issue since he

was 5yo...just getting worse (defiant, argumentative, etc.). *Took

him to Shands Hospital (Nov'04)in Gainesville,FL, where he was dx

with apd. They suggested an FM system which we purchased and used.

*Had a neuropsych eval also at Shands (also Nov'04)where they said

he has no other issues but adhd. They suggested we medicate him

which we have not. Another specialist (Jun'04)also said he had adhd

along with sensory integration dysfunction and anxiety. Just

recently (Oct'05) had qeeg/brainmap where they said his brainmap

shows he does NOT have adhd. Now going to " brainlab " where he gets

listening therapy, biofeedback, and brainbuilder among other things.]

All messages posted to this list are private and confidential. Each post is

the intellectual property of the author and therefore subject to copyright

restrictions.

[Guest guest]

,

Your post brings up a bunch of questions for me, most of which are answered

in your follow-up comments. You have a diagnosis of ADD from some heavy

hitters. Have you pursued this at all? ADD is often misdiagnosed, but when it's

real, it often does need medication. It's my understanding that ADD is due to

chemical imbalances, not to structural issues. I don't know what a

qeeg/brainmap shows, but I think I'd go back to the neuro-psych with the test

results

and ask for more input and advice.

There are a variety of mapping and scanning procedures that can image the

brain to determine what's working and what's not. Have they actually done this

k

ind of imaging so they can definitely say what parts of the brain are and

aren't working/developed? Just because one ear is deaf doesn't mean an entire

side of the brain won't work.

I'd be looking for another opinion, or someone else to interpret the

qeeg/brainmap results. I'd want more explanation because it just doesn't sound

right

to me -- our son's issues are due to a syndrome that caused the microtia,

the hearing loss, as well as some brain damage. But no one ever suggested that

because most of his problems are on the right side of his head, that the left

side of his brain wasn't working. Our son's strongest skills tested out to

be fluid reasoning and logic -- which according to your doctors live on the

side of his head that is " damaged. " I just don't think the brain divides up its

duties that neatly.

My next question, have you seen a geneticist? Not that one will give a

simple solution, but a geneticist might be able to tell you which syndrome you

might be dealing with and then you can seek out the right doctors to help.

Sometimes knowing what you're dealing with can give you a bit of a guideline.

For

instance, my friend's son has OCD, and as he went through puberty it was a

wild ride. A niece has a rare syndrome and they have a good idea at which

points she will encounter issues. For some syndromes, things tend to happen at

certain ages.

There are a bunch of syndromes which have microtia as a marker. My son has

one, it's called Goldenhar, and I an NOT suggesting that your son has this one.

(Only a geneticist can diagnose that.)

For Ian, during the 6th week of gestation -- before I even knew I was

pregnant, the blood vessels to the brain atrophied and caused the brain to not

develop in its usual fashion. Within a day or two, secondary vessels took over

and Ian developed normally but some damage was done. Children with this syndrome

can have a very mild presentation -- like Ian, or more severe presentations

which can include missing or misplaced ears and eyes. Ian has a " lope ear "

(microtia) as well as an oddly shaped/developed internal ear structure. The

left is more " normal " but still affected.

The thing is that along with the other things (microtia, nerve damage, etc)

brain damage can occur -- and did for Ian. The brain can indeed be

underdeveloped on one side or both and that can have all kinds of effects, from

minor

to major. But the brain is an amazing thing, when one part doesn't work it

will use another to do the same job. One specialist (craniofacial) reassured me

that kids like Ian are usually bright and capable. Intellect is not

necessarily affected when the brain is damaged, or when the hearing is gone.

Unless you can get things explained to you so that you understand and accept

them, I'd be looking for a new doctor .. even though you guys have obviously

been to quite a few. I know after a while we were very VERY tired of doctors

and Ian felt like everyone's lab rat. But if the answers you're getting just

don't make sense, then you need more explanation/information. If the current

docs can't give you the answers, or it just doesn't seem right. Look for a

new doctor.

As for advice on the BAHA, what do your doctors suggest? We had discussed a

BAHA for Ian while deciding what aids to get for him. He has a conductive

hearing loss and tried regular aids first. Since he gets good services from

those aids, we didn't pursue it. Since your son can't be aided traditionally,

the

BAHA sounds like a viable option.

Our Ian was a hearing child and he wanted to keep hearing, so if the aids

had been a failure, we'd have pursued the BAHA. WE were following Ian's

preference. What does your son want? He's 8, old enough to give you some

indication

about what he'd like.

Let us know how things are going and what the docs have to say.

Best -- Jill

[Guest guest]

,

Your post brings up a bunch of questions for me, most of which are answered

in your follow-up comments. You have a diagnosis of ADD from some heavy

hitters. Have you pursued this at all? ADD is often misdiagnosed, but when it's

real, it often does need medication. It's my understanding that ADD is due to

chemical imbalances, not to structural issues. I don't know what a

qeeg/brainmap shows, but I think I'd go back to the neuro-psych with the test

results

and ask for more input and advice.

There are a variety of mapping and scanning procedures that can image the

brain to determine what's working and what's not. Have they actually done this

k

ind of imaging so they can definitely say what parts of the brain are and

aren't working/developed? Just because one ear is deaf doesn't mean an entire

side of the brain won't work.

I'd be looking for another opinion, or someone else to interpret the

qeeg/brainmap results. I'd want more explanation because it just doesn't sound

right

to me -- our son's issues are due to a syndrome that caused the microtia,

the hearing loss, as well as some brain damage. But no one ever suggested that

because most of his problems are on the right side of his head, that the left

side of his brain wasn't working. Our son's strongest skills tested out to

be fluid reasoning and logic -- which according to your doctors live on the

side of his head that is " damaged. " I just don't think the brain divides up its

duties that neatly.

My next question, have you seen a geneticist? Not that one will give a

simple solution, but a geneticist might be able to tell you which syndrome you

might be dealing with and then you can seek out the right doctors to help.

Sometimes knowing what you're dealing with can give you a bit of a guideline.

For

instance, my friend's son has OCD, and as he went through puberty it was a

wild ride. A niece has a rare syndrome and they have a good idea at which

points she will encounter issues. For some syndromes, things tend to happen at

certain ages.

There are a bunch of syndromes which have microtia as a marker. My son has

one, it's called Goldenhar, and I an NOT suggesting that your son has this one.

(Only a geneticist can diagnose that.)

For Ian, during the 6th week of gestation -- before I even knew I was

pregnant, the blood vessels to the brain atrophied and caused the brain to not

develop in its usual fashion. Within a day or two, secondary vessels took over

and Ian developed normally but some damage was done. Children with this syndrome

can have a very mild presentation -- like Ian, or more severe presentations

which can include missing or misplaced ears and eyes. Ian has a " lope ear "

(microtia) as well as an oddly shaped/developed internal ear structure. The

left is more " normal " but still affected.

The thing is that along with the other things (microtia, nerve damage, etc)

brain damage can occur -- and did for Ian. The brain can indeed be

underdeveloped on one side or both and that can have all kinds of effects, from

minor

to major. But the brain is an amazing thing, when one part doesn't work it

will use another to do the same job. One specialist (craniofacial) reassured me

that kids like Ian are usually bright and capable. Intellect is not

necessarily affected when the brain is damaged, or when the hearing is gone.

Unless you can get things explained to you so that you understand and accept

them, I'd be looking for a new doctor .. even though you guys have obviously

been to quite a few. I know after a while we were very VERY tired of doctors

and Ian felt like everyone's lab rat. But if the answers you're getting just

don't make sense, then you need more explanation/information. If the current

docs can't give you the answers, or it just doesn't seem right. Look for a

new doctor.

As for advice on the BAHA, what do your doctors suggest? We had discussed a

BAHA for Ian while deciding what aids to get for him. He has a conductive

hearing loss and tried regular aids first. Since he gets good services from

those aids, we didn't pursue it. Since your son can't be aided traditionally,

the

BAHA sounds like a viable option.

Our Ian was a hearing child and he wanted to keep hearing, so if the aids

had been a failure, we'd have pursued the BAHA. WE were following Ian's

preference. What does your son want? He's 8, old enough to give you some

indication

about what he'd like.

Let us know how things are going and what the docs have to say.

Best -- Jill

[Guest guest]

,

Your post brings up a bunch of questions for me, most of which are answered

in your follow-up comments. You have a diagnosis of ADD from some heavy

hitters. Have you pursued this at all? ADD is often misdiagnosed, but when it's

real, it often does need medication. It's my understanding that ADD is due to

chemical imbalances, not to structural issues. I don't know what a

qeeg/brainmap shows, but I think I'd go back to the neuro-psych with the test

results

and ask for more input and advice.

There are a variety of mapping and scanning procedures that can image the

brain to determine what's working and what's not. Have they actually done this

k

ind of imaging so they can definitely say what parts of the brain are and

aren't working/developed? Just because one ear is deaf doesn't mean an entire

side of the brain won't work.

I'd be looking for another opinion, or someone else to interpret the

qeeg/brainmap results. I'd want more explanation because it just doesn't sound

right

to me -- our son's issues are due to a syndrome that caused the microtia,

the hearing loss, as well as some brain damage. But no one ever suggested that

because most of his problems are on the right side of his head, that the left

side of his brain wasn't working. Our son's strongest skills tested out to

be fluid reasoning and logic -- which according to your doctors live on the

side of his head that is " damaged. " I just don't think the brain divides up its

duties that neatly.

My next question, have you seen a geneticist? Not that one will give a

simple solution, but a geneticist might be able to tell you which syndrome you

might be dealing with and then you can seek out the right doctors to help.

Sometimes knowing what you're dealing with can give you a bit of a guideline.

For

instance, my friend's son has OCD, and as he went through puberty it was a

wild ride. A niece has a rare syndrome and they have a good idea at which

points she will encounter issues. For some syndromes, things tend to happen at

certain ages.

There are a bunch of syndromes which have microtia as a marker. My son has

one, it's called Goldenhar, and I an NOT suggesting that your son has this one.

(Only a geneticist can diagnose that.)

For Ian, during the 6th week of gestation -- before I even knew I was

pregnant, the blood vessels to the brain atrophied and caused the brain to not

develop in its usual fashion. Within a day or two, secondary vessels took over

and Ian developed normally but some damage was done. Children with this syndrome

can have a very mild presentation -- like Ian, or more severe presentations

which can include missing or misplaced ears and eyes. Ian has a " lope ear "

(microtia) as well as an oddly shaped/developed internal ear structure. The

left is more " normal " but still affected.

The thing is that along with the other things (microtia, nerve damage, etc)

brain damage can occur -- and did for Ian. The brain can indeed be

underdeveloped on one side or both and that can have all kinds of effects, from

minor

to major. But the brain is an amazing thing, when one part doesn't work it

will use another to do the same job. One specialist (craniofacial) reassured me

that kids like Ian are usually bright and capable. Intellect is not

necessarily affected when the brain is damaged, or when the hearing is gone.

Unless you can get things explained to you so that you understand and accept

them, I'd be looking for a new doctor .. even though you guys have obviously

been to quite a few. I know after a while we were very VERY tired of doctors

and Ian felt like everyone's lab rat. But if the answers you're getting just

don't make sense, then you need more explanation/information. If the current

docs can't give you the answers, or it just doesn't seem right. Look for a

new doctor.

As for advice on the BAHA, what do your doctors suggest? We had discussed a

BAHA for Ian while deciding what aids to get for him. He has a conductive

hearing loss and tried regular aids first. Since he gets good services from

those aids, we didn't pursue it. Since your son can't be aided traditionally,

the

BAHA sounds like a viable option.

Our Ian was a hearing child and he wanted to keep hearing, so if the aids

had been a failure, we'd have pursued the BAHA. WE were following Ian's

preference. What does your son want? He's 8, old enough to give you some

indication

about what he'd like.

Let us know how things are going and what the docs have to say.

Best -- Jill

[Guest guest]

I could not agree with more. I also think that if you can

find somebody who specializes or works with Deaf/HH kids that might

be helpful to you.

What is a qeeg/brainmap? Isn't ADHD a chemical imbalance ...does

ADHD show in EEGs?

I noticed you are in Gainesville. Maybe you can call Florida School

for the Deaf/Blind and see if they have a medical professional -

maybe in ville - they can recommend.

>

> Please take him to a psychiatrist who is familiar with depression

in children and have him evaluated for depression, bipolar disorder

and the spectrum of anxiety disorders. They mimic ADHD.

>

>

>> > [A little history if it matters: We've had a behavior issue

since he

> > was 5yo...just getting worse (defiant, argumentative, etc.).

*Took

> > him to Shands Hospital (Nov'04)in Gainesville,FL, where he was

dx

> > with apd. They suggested an FM system which we purchased and

used.

> > *Had a neuropsych eval also at Shands (also Nov'04)where they

said

> > he has no other issues but adhd. They suggested we medicate him

> > which we have not. Another specialist (Jun'04)also said he had

adhd

> > along with sensory integration dysfunction and anxiety. Just

> > recently (Oct'05) had qeeg/brainmap where they said his brainmap

> > shows he does NOT have adhd. Now going to " brainlab " where he

gets

> > listening therapy, biofeedback, and brainbuilder among other

things.]

> >

> >

> >

> >

> >

> >

> >

> > All messages posted to this list are private and confidential.

Each post is the

> > intellectual property of the author and therefore subject to

copyright

> > restrictions.

> >

[Guest guest]

I too noticed you were in Gainesville, a person who has written about and

studied CAPD there is Dr. Carl Crandell, he or his office might have something

to offer your son. He has also been involved in studying classroom acoustics

with Carol Flexer and others. Re the brain lab?? Is this something connected

with UF? Are they working on listening skills with something like Fast

Forward??

My daughter's behavior was atrocious before she was diagnosed at 3 3/4 years.

Extremely volatile, and had it persisted I'm certain it would fit the

description of Oppositional Defiance. Later she told us she was always mad and

didn't know what was going on around her often. So when seeking help with

ADD/ADHD and psychiatric stuff, make sure they know the issues of deaf/HOH kids

and people. in GA

Re: underdeveloped brain due to partial deafness??

>

>I could not agree with more. I also think that if you can

>find somebody who specializes or works with Deaf/HH kids that might

>be helpful to you.

>

>What is a qeeg/brainmap? Isn't ADHD a chemical imbalance ...does

>ADHD show in EEGs?

>

>I noticed you are in Gainesville. Maybe you can call Florida School

>for the Deaf/Blind and see if they have a medical professional -

>maybe in ville - they can recommend.

>

>>

>> Please take him to a psychiatrist who is familiar with depression

>in children and have him evaluated for depression, bipolar disorder

>and the spectrum of anxiety disorders. They mimic ADHD.

>>

>>

>>> > [A little history if it matters: We've had a behavior issue

>since he

>> > was 5yo...just getting worse (defiant, argumentative, etc.).

>*Took

>> > him to Shands Hospital (Nov'04)in Gainesville,FL, where he was

>dx

>> > with apd. They suggested an FM system which we purchased and

>used.

>> > *Had a neuropsych eval also at Shands (also Nov'04)where they

>said

>> > he has no other issues but adhd. They suggested we medicate him

>> > which we have not. Another specialist (Jun'04)also said he had

>adhd

>> > along with sensory integration dysfunction and anxiety. Just

>> > recently (Oct'05) had qeeg/brainmap where they said his brainmap

>> > shows he does NOT have adhd. Now going to " brainlab " where he

>gets

>> > listening therapy, biofeedback, and brainbuilder among other

>things.]

>> >

>> >

>> >

>> >

>> >

>> >

>> >

>> > All messages posted to this list are private and confidential.

>Each post is the

>> > intellectual property of the author and therefore subject to

>copyright

>> > restrictions.

>> >

[Guest guest]

I too noticed you were in Gainesville, a person who has written about and

studied CAPD there is Dr. Carl Crandell, he or his office might have something

to offer your son. He has also been involved in studying classroom acoustics

with Carol Flexer and others. Re the brain lab?? Is this something connected

with UF? Are they working on listening skills with something like Fast

Forward??

My daughter's behavior was atrocious before she was diagnosed at 3 3/4 years.

Extremely volatile, and had it persisted I'm certain it would fit the

description of Oppositional Defiance. Later she told us she was always mad and

didn't know what was going on around her often. So when seeking help with

ADD/ADHD and psychiatric stuff, make sure they know the issues of deaf/HOH kids

and people. in GA

Re: underdeveloped brain due to partial deafness??

>

>I could not agree with more. I also think that if you can

>find somebody who specializes or works with Deaf/HH kids that might

>be helpful to you.

>

>What is a qeeg/brainmap? Isn't ADHD a chemical imbalance ...does

>ADHD show in EEGs?

>

>I noticed you are in Gainesville. Maybe you can call Florida School

>for the Deaf/Blind and see if they have a medical professional -

>maybe in ville - they can recommend.

>

>>

>> Please take him to a psychiatrist who is familiar with depression

>in children and have him evaluated for depression, bipolar disorder

>and the spectrum of anxiety disorders. They mimic ADHD.

>>

>>

>>> > [A little history if it matters: We've had a behavior issue

>since he

>> > was 5yo...just getting worse (defiant, argumentative, etc.).

>*Took

>> > him to Shands Hospital (Nov'04)in Gainesville,FL, where he was

>dx

>> > with apd. They suggested an FM system which we purchased and

>used.

>> > *Had a neuropsych eval also at Shands (also Nov'04)where they

>said

>> > he has no other issues but adhd. They suggested we medicate him

>> > which we have not. Another specialist (Jun'04)also said he had

>adhd

>> > along with sensory integration dysfunction and anxiety. Just

>> > recently (Oct'05) had qeeg/brainmap where they said his brainmap

>> > shows he does NOT have adhd. Now going to " brainlab " where he

>gets

>> > listening therapy, biofeedback, and brainbuilder among other

>things.]

>> >

>> >

>> >

>> >

>> >

>> >

>> >

>> > All messages posted to this list are private and confidential.

>Each post is the

>> > intellectual property of the author and therefore subject to

>copyright

>> > restrictions.

>> >

[Guest guest]

I too noticed you were in Gainesville, a person who has written about and

studied CAPD there is Dr. Carl Crandell, he or his office might have something

to offer your son. He has also been involved in studying classroom acoustics

with Carol Flexer and others. Re the brain lab?? Is this something connected

with UF? Are they working on listening skills with something like Fast

Forward??

My daughter's behavior was atrocious before she was diagnosed at 3 3/4 years.

Extremely volatile, and had it persisted I'm certain it would fit the

description of Oppositional Defiance. Later she told us she was always mad and

didn't know what was going on around her often. So when seeking help with

ADD/ADHD and psychiatric stuff, make sure they know the issues of deaf/HOH kids

and people. in GA

Re: underdeveloped brain due to partial deafness??

>

>I could not agree with more. I also think that if you can

>find somebody who specializes or works with Deaf/HH kids that might

>be helpful to you.

>

>What is a qeeg/brainmap? Isn't ADHD a chemical imbalance ...does

>ADHD show in EEGs?

>

>I noticed you are in Gainesville. Maybe you can call Florida School

>for the Deaf/Blind and see if they have a medical professional -

>maybe in ville - they can recommend.

>

>>

>> Please take him to a psychiatrist who is familiar with depression

>in children and have him evaluated for depression, bipolar disorder

>and the spectrum of anxiety disorders. They mimic ADHD.

>>

>>

>>> > [A little history if it matters: We've had a behavior issue

>since he

>> > was 5yo...just getting worse (defiant, argumentative, etc.).

>*Took

>> > him to Shands Hospital (Nov'04)in Gainesville,FL, where he was

>dx

>> > with apd. They suggested an FM system which we purchased and

>used.

>> > *Had a neuropsych eval also at Shands (also Nov'04)where they

>said

>> > he has no other issues but adhd. They suggested we medicate him

>> > which we have not. Another specialist (Jun'04)also said he had

>adhd

>> > along with sensory integration dysfunction and anxiety. Just

>> > recently (Oct'05) had qeeg/brainmap where they said his brainmap

>> > shows he does NOT have adhd. Now going to " brainlab " where he

>gets

>> > listening therapy, biofeedback, and brainbuilder among other

>things.]

>> >

>> >

>> >

>> >

>> >

>> >

>> >

>> > All messages posted to this list are private and confidential.

>Each post is the

>> > intellectual property of the author and therefore subject to

>copyright

>> > restrictions.

>> >

[Guest guest]

Hi Jill,

>It's my understanding that ADD is due to

> chemical imbalances, not to structural issues.

We've also been seeing a naturopathic doctor (with an MD in internal

medicine). He ran a multitude of tests, one of which showed ds's

neurotransmitters out of whack, so now ds is taking supplements to

balance that out.

> My next question, have you seen a geneticist?

> My son has

> one, it's called Goldenhar, and I an NOT suggesting that your son

has this one.

> (Only a geneticist can diagnose that.)

Actually, that's what my son has also, though very mild. Other than

the ear, the other anomalies are hemivertebrae and hfm. As you

probably did also, we first met with the geneticist when ds was just

weeks old.

> The thing is that along with the other things (microtia, nerve

>damage, etc)brain damage can occur -- and did for Ian. The brain

>can indeed be underdeveloped on one side or both and that can have

>all kinds of effects, from minor to major.

I never even considered that Goldenhar would have any play in our

current situation (re: brain damage). I'll have to look into that.

> I know after a while we were very VERY tired of doctors

> and Ian felt like everyone's lab rat.

Tell me about it! :-)

> What does your son want? He's 8, old enough to give you some

indication about what he'd like.

DS is very sensory sensitive and remembers waking up with an IV in

his arm after an MRI 2-3 years ago. He was hysterical beyond

measure. The nurses wouldn't remove the IV until ds drank some

juice, but ds just screamed and cried and refused to drink. It was

awful. So any mention of hospitals, needles, BAHA...ds freaks out.

Thanks for the info, Jill. I'd love to keep in touch.

[Guest guest]

Hi ,

> I too noticed you were in Gainesville

Actually we're in Sanford, just north of Orlando. We traveled to

G'ville just for the evals.

> a person who has written about and studied CAPD there is Dr. Carl

>Crandell, he or his office might have something

>to offer your son. He has also been involved in studying classroom

>acoustics with Carol Flexer and others.

I'm surprised I didn't hear of them when I met with Dr. Hall at

Shands.

>Re the brain lab?? Is this something connected with UF? Are they

>working on listening skills with something like Fast Forward??

AT the brain lab ds receives therapy that covers auditory and visual

as well as neurotherapy. There's also a neurodevelopmental program

that we do at home.

> My daughter's behavior was atrocious before she was diagnosed at 3

>3/4 years. Extremely volatile, and had it persisted I'm certain it

>would fit the description of Oppositional Defiance.

What was she dx with?

Thanks for your insight, . I do appreciate it.

[Guest guest]

It sounds like a brush off to me, an admission that something is wrong, but

instead of a real reason they fell back on the " deaf and dumb " thing (forgive me

for saying that.) By any chance, did the neurodevelopmentalist say that? Some

of them rely on theories about hemispheric dominance that are not widely

accepted. Have you taken this info back to the neuropsychologist for their

opinion? I would investigate the Goldenhar's further.

Hi. My 8yo son is HOH due to no ear canal on left side

(microtia/aural atresia). Was just told last week that since my son

cannot hear outof his left ear, the right side of his brain(emotion,

self-control)is underdeveloped. This explains why, when angry, he

reacts like a 3yo (bites, pinches, etc.). " They " said that in

contrast, the left side of his brain (logic) is extremely well-

developed since his right ear has done all of the hearing for 8

years. Okay, I'm " just " a mom who's trying to " fix " my son, so I

don't know if what these guys have said about " left ear/right brain "

is correct. Any ideas? He's a smart little guy with a sense of

humor and a sweet side. But I'm confused as to what to do regarding

his hearing (should we fix it with an operation or a BAHA or what).

Any of this sound familiar? Thanks for reading.