RE: husbands/diabetes/LVAs

[Guest guest]

> 's hearing loss has never been attributed to anything specific, but

the

> doctor at the House Ear Clinic in Los Angeles did indicate that he had a

> " mild dilation of the vestibular aqueduct " but said he doubted it was

related

> to his hearing impairment.

Hi Kerry,

I'm still trying to research Enlarged Vestibular Aqueduct Syndrome myself

but I do know that in my son's case, he has a greatly enlarged space on the

left side and the one on the right is " just outside of the normal range "

(which is up to 1.5 mm). Although the size of the aqueduct space isn't

supposed to correlate with the amount of hearing loss, ' loss is

slightly worse on the left (mod to severe/profound) than it is on the right

(mild to severe). Still, EVA is a relatively new discovery in the medical

community and there is so much that is not known! I would suspect that any

enlargement puts your son at risk for further loss, especially in light of

your comment about his increased loss following a blow to the head (chin).

Also, the doctor who gave you that information 5 years ago might have more

to say now that additional research has been done.

In my personal experience (which is in no way exhaustive!), our ENT is

familiar with the syndrome while the three audiologists we've seen are not.

With that said, even our ENT knew only the basics and I actually got better

information from other Listen-up list members than I did from the doctors.

For example, we were told must avoid contact sports...but we were not

warned about sudden or great changes in intracranial pressure such as could

be experienced with flying in small aircraft or deep sea diving. I learned

those things here. (Thanks, guys!)

I would suggest you ask your ENT directly what he/she knows about this

syndrome. If it isn't much, that might prod him into doing further

research. (When I told our pediatrician about EVA, he immediately hit his

medical books and journals to find out more...which, to me, is the sign of a

good doctor.) I also keep asking our ENT's assistant additional questions

which she asks the doctor on my behalf and then gets back to me. I've

gotten a few " we don't know " responses but at least I'm making them think!

BTW, you mention that your son plays soccer. There has been mention in

recent medical journals of cases of EVA which were diagnosed when boys who

routinely " head " the ball during the game woke up with hearing

losses...sometimes permanent, sometimes not, depending on treatments such as

steroids. Apparently, heading the ball if you have identified EVA is

counterindicated.

Carol - mom to , 4.10, mild to severe/profound sensorineural HL

near Seattle

[Guest guest]

.. Apparently, heading the ball if you have identified EVA is

> counterindicated.

Sorry, that should be contraindicated. It's too late for me to be trying to

spell! LOL!

Carol

[Guest guest]

<< In my personal experience (which is in no way exhaustive!), our ENT is

familiar with the syndrome while the three audiologists we've seen are not.>>

Thanks for the response, Carol. You confirmed what I have been thinking

since joining this list. I did call the ENT yesterday to get an appointment,

and they said it would be a month and a half before we could get in. I think

I'll do what you suggested and talk to his assistant--and our pediatrician

too. We just saw her yesterday--should have mentioned it then. has had

a chronic cough/throat clearing for severl months now, and we thought it was

a symptom of his Tourette's since the prescribed meds weren't helping. Now

they think it may be a sinus infection, so they took an x-ray of his sinuses.

When she calls me with the results, I'll ask her about EVAs. Maybe it's

time for a new CT scan.

<<There has been mention in recent medical journals of cases of EVA which

were diagnosed when boys who routinely " head " the ball during the game woke

up with hearing losses...sometimes permanent, sometimes not, depending on

treatments such as steroids. Apparently, heading the ball if you have

identified EVA is

counterindicated. >>

I remember reading this, and definitely want to get an answer before I sign

him up again this fall. Thanks again!

Kerry

[Guest guest]

I have been a diabetic since I was 12, started taken pills when I was 17, I

took them until I went to the doctor to confirm my pregnancy, I was told

that the shots done cross the placenta, but the pills(DIABATA) does. After

was born I went to taken the pills again, then started when I was

pregnant with my daughter, My sugar was real bad, Had a tough time with her,

but she ok, I asked the doctor about my age and beening a diabetic, and the

awful time I had during the last pregnancy, about having more kids. He

suggested not, My husband wanted more kids, as I did. but when was

4 months old she had RSV and the results left her with a bad heart murmur

and RADs, while she was in the hospital, my sister had to keep because

My husband could not understand our son enough to take care of him. I had a

dream of me getting sick and no one could watch him. Well, after allot of

thought and tears on my part, I decided not to have any more kids, I could

not see taken a chance of losing my life for another kid, and the kids I

have already got, not having a mom at all.

I have always been the one to take them to the doctors and hearing checks

and everything, if something ever happened to me, he would have no clue what

is going on. I try to keep my sister tuned in on everything about my kids

( just in case) .

I worked until was born, and worked one day after my 6 weeks was up. I

stay at home now, but I think I work harder now then I did working away from

home. goes to pre-school 2 days a week, and the 3 days she is home,

well, she demands all my attention. I really feel I have no time for myself.

It seems funny, since I got the internet, and found groups like this one, I

finally fit in somewhere. And it has really helped knowing there are more

people like me that has the same problems I have( having a deaf son).

Bonnie

husbands/diabetes/LVAs

> I had gestational diabetes during my pregnancy, and often wondered if that

> had anything to do with my son's hearing loss, since I was on insulin the

> last couple months

[Guest guest]

Kerry,

I want to add to your comment re " blame " . I have been an insulin dependent

diabetic for 22 years, and through all of my pregnancies. While quite a few of

the difficulties in my pregnancies were related to diabetes, hearing loss is not

considered one of them. I have five healthy children proving yet again that

diabetics can lead normal lives in every way, just need good control and careful

monitoring

I think the only time I ever asked myself " why " my son was born Deaf, was about

a week after he was diagnosed. It took me about a day of tossing it around to

come to the conclusion that IT DIDN'T MATTER. Spending days, weeks, months and

years trying to figure out why, or who to blame would be just about the biggest

waste of time needed for other things that I can imagine.

What would it change to know why? Would that make him less Deaf? Even if it

could give me information on different things that I would want to try working

on, there is still no guarntee that any of those things would work, so it's the

same trial and error process regardless.

Would my other children have more of a proclivity to be born Deaf? Again, what

would knowing that change? Not to have them? What a shame that would be.

I am so thrilled that the Deaf community has welcomed me and my son into a place

where deafness is something to be proud of. A place where " hearies " like me

are the minority. What a wake-up call for me to see what my son experiences on

a daily basis in terms of discrimination, ignorance, loneliness, frustration

when I found myself in the minority. But I was embraced and welcomed when I

made the effort to connect, and will always be grateful to have this community

of support for myself and my son. It is his place, he doesn't need to " fit in " ,

he is in.

I celebrate my son's deafness. It brought me into a place I would never known

existed. Blame/reasons for deafness seem so minor to me....

Ramble ramble....smile,

Janet

[Guest guest]

> >

> I worked until was born, and worked one day after my 6 weeks was up.

I

> stay at home now, but I think I work harder now then I did working away

from

> home. goes to pre-school 2 days a week, and the 3 days she is

home,

> well, she demands all my attention. I really feel I have no time for

myself.

> It seems funny, since I got the internet, and found groups like this one,

I

> finally fit in somewhere. And it has really helped knowing there are more

> people like me that has the same problems I have( having a deaf son).

>

> Bonnie

>

> >Dear Bonnie, I know how you feel! Being sick yourself and trying to raise

special needs children. I and my three boys all have heart disease and one

son hearing impaired,the other with a mild conductive loss. My one 4yr old

needs to have open heart surgery this summer after going thru 3 heart

caths.The oldest has already had open heart. Thank God my other twin will

not need heart surgery. When my twins where two I was so tired, I cannt even

discribe how tired I was but I found out that I needed a pacemaker ( I had

open heart at 16yrs old, boy what a quilt trip I was on for awhile) We are

all doing better now but I just can not believe all this is happening to us!

Thank goodness my husband is a rock and understanding and HEALTHY! But back

on track,.. I find it so hard to get out and find time to myself. My mind is

screaming for a break sometimes. My computer helps, well it is my sons, It

was a wish from " Make a Wish " foundation. What a wonderful foundation!

The groups on the computer are my mind break too.Not that I wish it on

anyone but I see I am not the only one with problems. The group is so

helpful too!

Good luck and Best wishes

Take Care,

Ruth mom of three cute redhead boys

[Guest guest]

> What would it change to know why? Would that make him less Deaf?

It could. For example, I knew one lady whose child used to beat his head against

the floor

when he was upset. The docs told her to just let him do it, that eventually

he'll learn to

stop. A few years later, she learned the child has LVAS which means that every

time her

son sat there beating his head against the floor, he was losing more and more of

his

hearing. Before she learned about the LVAS the doctors were at a loss as to why

her son

was losing more and more of his hearing. To this day that mother still beats

herself up

for listening to the doctors and not stopping him when he did it.

There are other instances where knowledge of a child having a hearing loss

associated with

a particular syndrome could affect a parents choice of communication to use with

that

child, or could help the parent spot problems that may be likely to develop

later, that

might have been missed till it was too late.

I also think it fair, as a child grows to adulthood, that he knows if his

deafness is

likely to be passed along to their offspring or not. How much importance they

choose to

give that information is up to them, but I do think it's an important piece of

information

for them to have, if it's available.

Kay

[Guest guest]

Because we knew that our son's hearing loss would probably be

progressive (which it has been), we made plans for a visual modality of

communication, Cued Speech, that would allow him to continue to use his

residual hearing until it was gone and then be an excellent candidate

for a CI. It also helped us prepare psychologically, though each time

he's had a drop, we mourn all over again. I think it IS important to

know IF there is a way to find out. I think that too many doctors

dismiss the reason why.

[Guest guest]

That is sort of like, I had a doctor to tell me, after we found out about

deafness, we noticed using his left hand. the doctor told us

that most deaf or HOH kids are left handed. I don't know why. that if a

child is left handed to watch out for some kind of disabilities. Does any

one know any thing about this?

Bonnie

Re: husbands/diabetes/LVAs

> > >

> 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]

Kay,

Speaking about kids who are born Deaf, not those who are losing their hearing

for whatever reason (headbanging/syndromes/etc) , meaning that deaf is deaf for

this group. My kid could care less about WHY he is Deaf. It is his dream to

marry a Deaf woman and have all Deaf kids, so I guess he won't so much have to

deal with the possibility of a mate who might not think that is a good thing,

smile. (Grandma won't care which way it goes, as she loves to sign OR tell

stories!)

And as I stated before, sure it can help perhaps in making you aware of what

choices might work in regards to a specific syndrome or disability, but there is

still no guarantee, it remains an indiviual search for what works best for the

child.

I think we are on the same page for the most part,

Janet

[Guest guest]

My HI son is RT handed? Never heard of that! Actully my other twin is LT

handed and he is hearing

interesting,

Ruth

Re: husbands/diabetes/LVAs

>

>

> > > >

> > 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 two right-handed children with a hearing loss.

Re: husbands/diabetes/LVAs

My son is left-handed.....others???

[Guest guest]

,

Agree with your position, I think mine is being misunderstood. I am talking

about kids who are born Deaf, not those who are losing their hearing for

whatever reason. Same as knowing about different diseases or syndromes where

hearing loss is an integral part, or perhaps a possible outcome. Not the same

scenario.

Janet

[Guest guest]

My son is left-handed.....others???

[Guest guest]

At 11:32 AM 3/2/01 -0500, you wrote:

>Agree with your position, I think mine is being misunderstood. I am

>talking about kids who are born Deaf, not those who are losing their

>hearing for whatever reason. Same as knowing about different diseases or

>syndromes where hearing loss is an integral part, or perhaps a possible

>outcome. Not the same scenario.

Just another one of those situations...there's no *one* thing that's right

for every kid. (We have to keep reminding our schools of that, right?!)

:-) My son was born deaf, and hasn't lost any hearing since his first

audiogram, but because he's oral, we deal with different issues than a

child who was born Deaf and signs.

It's remarkable how different we all are, and yet how much we share in common.

[Guest guest]

Donna,

The community of Deaf/deaf adults is a valuable resource for us all. These

folks are whom our kids will grow up to be...we should really use that " real

experience " when raising our own kids. Using what fits and tossing what

doesn't, smile. We go through all that other information with a fine tooth

comb...audiologists, speech therapists, ENT's, CI doctors...Wonder how many of

these folks were deaf themselves??

Smiles

Janet

[Guest guest]

--Original Message Text---

From: Janet Lineberry

Date: Fri, 02 Mar 2001 10:58:13 -0500

Speaking about kids who are born Deaf, not those who are losing their

hearing for whatever reason (headbanging/syndromes/etc) , meaning that

deaf is deaf for this group. My kid could care less about WHY he is

Deaf. It is his dream to marry a Deaf woman and have all Deaf kids, so

I guess he won't so much have to deal with the possibility of a mate

who might not think that is a good thing, smile. (Grandma won't care

which way it goes, as she loves to sign OR tell stories!)

And as I stated before, sure it can help perhaps in making you aware of

what choices might work in regards to a specific syndrome or

disability, but there is still no guarantee, it remains an indiviual

search for what works best for the child.

I think we are on the same page for the most part,

---------------------

We are with you! My JJ was born stone-cold deaf, though she has

several friends who had progressive losses, and they are Deaf, (even

the one whose audiogram says she is hard of hearing) and they really

don't care why, either. They are all now ASL users, with some, like JJ

having grown up with it, and some choosing it as they grew older. I

think the important thing to realize is that for some persons with a

hearing loss, not only is the WHY of it not important, but speech is

not a primary factor in their lives, either, and these persons are far

from being failures! What works for some does not work for others.

Deaf Culture is not for all, but it is a warm and comfortable niche for

those for whom it is " home. "

Celeste

Celeste

[Guest guest]

At 11:43 AM 3/2/01 -0500, you wrote:

>The community of Deaf/deaf adults is a valuable resource for us

>all. These folks are whom our kids will grow up to be...we should really

>use that " real experience " when raising our own kids. Using what fits and

>tossing what doesn't, smile.

That's true. There's a lot to be learned from others who have walked in our

shoes, or in our kids' shoes! :-) I have to admit, though, sometimes I feel

like I'm twisting in the wind, because there really *aren't* deaf adults

(at least around here) who grew up as my son is, with hearing aids from

birth, with digital technology, wireless FMs, completely integrated

education, cochlear implants, etc. Talk about flying by the seat of your pants.

Sometimes it's a great feeling of forging ahead, and other times it's like

walking a tightrope without a net (much more scary than exciting). I don't

know what kind of success my son, Teddy, is likely to have, because there

really aren't statistics and studies and long-term observations to back up

the decisions we've made. It does make it harder sometimes to get services

from schools, for example, because there aren't years and years of data to

support the fact that an FM might be beneficial for a kid like mine...

Just thinking about it is making me quake in my boots! :-)

[Guest guest]

Exactly! That's why this site is serving an exciting role for parents. Here's

to the founders!

[Guest guest]

>

> I celebrate my son's deafness. It brought me into a place I would never

known existed. Blame/reasons for deafness seem so minor to me....

>

Janet,

Bravo to you!!! I'm so glad you can have such a good outlook on your son's

deafness. I too am proud to have a hoh son. I think the deaf community is

great and very supportive.

Donna

mother to ny 5, mod/severe

2, hearing

[Guest guest]

In a message dated 3/2/2001 11:02:15 AM Eastern Standard Time,

66bonnie@... writes:

> I don't know why. that if a

> child is left handed to watch out for some kind of disabilities. Does any

> one know any thing about this?

>

I had a retired special ed teacher ask me if my ADHD/ODD son was left handed

to which I said yes. She said in her years and years of teaching a very high

majority of the ADHD, dyslexia and such kids were lefties. My deaf son is a

righty and I think he has ADHD too. We know he has ODD. We are trying to

have him evaluated for ADHD soon.

Elaine.

Cueing Mom to Jake/Auditory Neuropathy/Clarion S-Series 2-99

[Guest guest]

Celeste,

Was glad to see ur response, as I was hesitant to bring up the speech thing with

what seems like a majority of residual hearing/ hearing aid users/speech classes

etc kids on this site. I am pleased that this list follows its claim of respect

for choices.

I am a complete advocate of language first, speech second (if ever). I think CI

choosers are making a big mistake in not using a combination of auditory and

manual communication esp with young children. If the CI is a success, and your

child can communicate fully orally, the signs will fade away from non-use.

Knowing and using sign will NOT cause your child's speech to be less. In fact

not only is it time to put that myth to rest, but to see the research that shows

kids have better speech, if they have been exposed to sign. If however, the CI

is either a total wash, or not enough to make communication happen strictly on

an auditory/verbal level, your child already has the language base to have

access to the world, and the abililty to learn a second language, English, in

its written form.

There is no speech happening in my home....my two Deaf men (husband and son) are

" Deaf as doornails " , speech is simply a non-entity. We know many, many

successful Deaf adults with no speech whatsoever who are in professional jobs,

travel extensively, interact with their hearing neighbors and friends, and go

through daily life without it.

If it's there, great. Use it, to the best you can. If it's not, stop mourning

for something that isn't and see the person, not the hearing status. Life

without speech certainly has not restricted us in any way.

Can you imagine the parent of a totally blind child spending years trying on

" new " glasses, bec the latest must be the one that will let her see??

Apples and oranges I guess....do you people realize that I am getting absolutely

NO work done at the office bec of this site??? SMILE. Gotta send it to my

home.. Love the dialogue!

[Guest guest]

I think we can all agree that, no matter if our families are signing or

auditory, we are just trying to do the best for our kids. Respect for what

is right for each kid is the most important thing!

Best wishes,

Re: husbands/diabetes/LVAs

Celeste,

Was glad to see ur response, as I was hesitant to bring up the speech

thing with what seems like a majority of residual hearing/ hearing aid

users/speech classes etc kids on this site. I am pleased that this list

follows its claim of respect for choices.

I am a complete advocate of language first, speech second (if ever). I

think CI choosers are making a big mistake in not using a combination of

auditory and manual communication esp with young children. If the CI is a

success, and your child can communicate fully orally, the signs will fade

away from non-use. Knowing and using sign will NOT cause your child's

speech to be less. In fact not only is it time to put that myth to rest,

but to see the research that shows kids have better speech, if they have

been exposed to sign. If however, the CI is either a total wash, or not

enough to make communication happen strictly on an auditory/verbal level,

your child already has the language base to have access to the world, and

the abililty to learn a second language, English, in its written form.

There is no speech happening in my home....my two Deaf men (husband and

son) are " Deaf as doornails " , speech is simply a non-entity. We know many,

many successful Deaf adults with no speech whatsoever who are in

professional jobs, travel extensively, interact with their hearing neighbors

and friends, and go through daily life without it.

If it's there, great. Use it, to the best you can. If it's not, stop

mourning for something that isn't and see the person, not the hearing

status. Life without speech certainly has not restricted us in any way.

Can you imagine the parent of a totally blind child spending years trying

on " new " glasses, bec the latest must be the one that will let her see??

Apples and oranges I guess....do you people realize that I am getting

absolutely NO work done at the office bec of this site??? SMILE. Gotta

send it to my home.. Love the dialogue!

[Guest guest]

My daughter was diagnosed with a profound hearing loss as a baby (and no

response at 100 dB by ABR at age 3), but then around age 5 - 6, her

audiogram changed to show severe-profound (sloping), with response at 90 dB

at the worst frequencies. I have no idea why these changes occurred. She was

a 28 week preemie, born to a drug using mom, 5 months NICU, on oxygen and

feeding tube when I got her at 30 months. Oh, yeah, she had no hearing aids

and no language. The foster home had done a heroic job of keeping her alive,

but language had not reached the top of the priority list. They were trying

to learn sign language themselves and teach it to her at the same time,

using flash cards. The pediatrician didn't agree that she was deaf, since

she responded to so many door-slam type mickeymouse hearing tests, and so he

refused to refer her for intervention. The foster mother didn't know how to

get any more help and relied on the pediatrician's opinion.

I gave her an ASL-based education, based on the research that said that

learning a language that was accessible first would lead to a basis on which

to learn a second language. Speech was not a priority for me. I wanted for

her to have language and the other academics, and I was not willing to give

them up in pursuit of speech.

Now, she is 10 years old, has digitally programmable hearing aids that are

SUCH an improvement, and has aided hearing in the 40 dB range across all but

the highest frequencies, where it goes to about a 60dB level. She is showing

interest in using speech, so I have pursued it now. She is getting half an

hour, twice a week, in her classroom setting (she is in a DHH special day

class) and twice a week for an hour after school with a private therapist -

one hour alone and one hour with a child her age who has a recent cochlear

implant.

I have some regrets in the choices I have made, but none of them are for

having chosen to use ASL first. They are more from not having known enough

or pushed hard enough or been persistent enough. She has academic delays,

but is improving. She also has visual problems (correcting monocular vision

by use of prism glasses), attention problems (takes medication for ADHD),

and memory problems (understands quickly, but requires much repetition to

put the understanding into long-term memory), likely from the prematurity

and gestational drug exposure, but her cognitive ability is very high. She's

also temperamentally a little lazy (or is that from being 10) and makes

excuses and is a disorganized, messy-room, cat-and-dog-loving, dancer and

SINGER. She does the worst job in the family when it's her turn to do

dishes, and is the most creative in finding ways to make the baby happy. She

can find anything that is lost, sometimes even before you tell her what

you're looking for. She's learning to use email and instant messenger to be

a penpal with another deaf girl her age, and I'm almost tearfully thrilled.

Now, about those dirty socks and pajamas that the puppies just brought out

of her room. . . .

Judith

Proud to be Pearl's mom

[Guest guest]

I think we all know how you feel having no time for yourselves!! I'm afraid

we are all in the same boat!

Even though I feel absolutely exhausted at the end of each day, I still

enjoy logging on - it really helps me feel that this is " my time " .

Re: husbands/diabetes/LVAs

> >

> I worked until was born, and worked one day after my 6 weeks was

up.

I

> stay at home now, but I think I work harder now then I did working away

from

> home. goes to pre-school 2 days a week, and the 3 days she is

home,

> well, she demands all my attention. I really feel I have no time for

myself.

> It seems funny, since I got the internet, and found groups like this

one,

I

> finally fit in somewhere. And it has really helped knowing there are

more

> people like me that has the same problems I have( having a deaf son).

>

> Bonnie

>

> >Dear Bonnie, I know how you feel! Being sick yourself and trying to

raise

special needs children. I and my three boys all have heart disease and one

son hearing impaired,the other with a mild conductive loss. My one 4yr old

needs to have open heart surgery this summer after going thru 3 heart

caths.The oldest has already had open heart. Thank God my other twin will

not need heart surgery. When my twins where two I was so tired, I cannt

even

discribe how tired I was but I found out that I needed a pacemaker ( I had

open heart at 16yrs old, boy what a quilt trip I was on for awhile) We are

all doing better now but I just can not believe all this is happening to

us!

Thank goodness my husband is a rock and understanding and HEALTHY! But

back

on track,.. I find it so hard to get out and find time to myself. My mind

is

screaming for a break sometimes. My computer helps, well it is my sons, It

was a wish from " Make a Wish " foundation. What a wonderful foundation!

The groups on the computer are my mind break too.Not that I wish it on

anyone but I see I am not the only one with problems. The group is so

helpful too!

Good luck and Best wishes

Take Care,

Ruth mom of three cute redhead boys