No testing?!

[Guest guest]

In a message dated 5/19/2006 10:14:47 A.M. Eastern Daylight Time,

saraandchadd@... writes:

I'm confused....help.

Two words: Second opinion. You're not comfortable, so get another opinion.

As for a life on steroids, I'd do just about anything to avoid that. I've

been on them for extended periods of time and known people who have needed to

be on them for much of their lives. Long term use raises the possibilities all

kinds of problems and it is a choice that should not be made lightly.

If I suspected an autoimmune disorder in my child, I'd want to know the

extent of that condition and then to make the medication decisions based on

concrete information, not a sweeping generalization about living on steroids

(even

though I agree about avoiding them).

Best -- Jill

[Guest guest]

In a message dated 5/19/2006 12:14:36 P.M. Eastern Daylight Time,

Barbara.T.Mellert@... writes:

Oh - and what Jill says about steroids. I think steroid use over time

is a really difficult decision and shouldn't be made lightly.

Barbara

I'm jumping back in here because this really is a serious consideration.

I have asthma, the kind you don't outgrow. I've had different steroids

throughout my entire life. Knowing that several were cortico-steroids, I've

done

reading on steroid use. I've gotten quite an overview and can definitely say

it is a serious decision to choose to be on them for extended times and it

should not be mad lightly.

Because of what turned out to be a life threatening blood disorder, I was on

prednisone in the last trimester of both my pregnancies. Add in

hydrocortisone for my daughter's because I was much sicker. That decision was

made so

that I would still be here to raise my kids. While I don't regret that choice,

it was very hard because I was pregnant and those are serious drugs. A dear

friend's sister had Lupis and spent much of her life on steroids. The steroids

may or may not have extended her life, but we know for sure that they did

cause side effects.

So, while steroids can indeed save lives, they can also cause problems. I

sought out a second and third opinion during my second pregnancy, not because I

distrusted my OB-GYN and hematologist -- I trusted them completely, but

because the concept of being on those drugs while pregnant terrified me. I saw

another OB-GYN and hematologist. My doctors were very well informed and we

followed their advice and everyone here is happy and healthy. But it not a

decision that we made lightly

I seriously encourage you to get a second opinion, even a third or a fourth.

After you have the information you need and feel you understand the

choices, then decide if the benefits of extended steroid use outweigh the

risks.

Best -- Jill

[Guest guest]

I went to the ENT the other day as requested by my audi to have him

schedule all testing he could - MRI, blood testing, etc.

He scheduled absolutely NOTHING? I'm a little dumbfounded? Has anyone

NOT had ANY testing done?

He said that nothing can be done anyway to prevent further HL if their

loss is indeed progressive. He said even in the case of autoimmune

disorders the risks of a life on steroids far outweigh the risks of a

progressive loss. Is this right? What now? Do I go to someone else?

Is testing necessary? I'm going to do the genetic testing but what

about the other stuff that he was suppose to do?

I'm confused....help.

[Guest guest]

I don't know much about autoimmune hearing loss, but I will say that, yes, there

are huge risks to being on steroids for an extended periods of time, let alone

indefinitely. is on a low dose inhaled steroid for his asthma and I hate

that.

Cherie

saraandchadd saraandchadd@...> wrote:

I went to the ENT the other day as requested by my audi to have him

schedule all testing he could - MRI, blood testing, etc.

He scheduled absolutely NOTHING? I'm a little dumbfounded? Has anyone

NOT had ANY testing done?

He said that nothing can be done anyway to prevent further HL if their

loss is indeed progressive. He said even in the case of autoimmune

disorders the risks of a life on steroids far outweigh the risks of a

progressive loss. Is this right? What now? Do I go to someone else?

Is testing necessary? I'm going to do the genetic testing but what

about the other stuff that he was suppose to do?

I'm confused....help.

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]

Sara-

All of the initial testing for Hadley was ordered by a pediatric ENT at

our local children's hospital (genetic testing, EKG, renal ultrasound,

CT scan of cochleas, sedated ABR). We were referred to Children's

Hospital by Hadley's pediatrician after she failed the newborn screening

and was showing some kind of SNHL after ABRs while asleep. Our local

ENT (who we now use for routine ear care and infections and whom we

began seeing after Hadley received her aids) does not have the resources

to do these tests.

I forget, are you back in Louisiana now? If yes, did you see the

practice at NOLA already? You need to be hooked up with ENTs who are

part of a communication disorders/audiology/language/speech department

(they all use different names).

I know it may feel like you are going back to square one, but it

sometimes takes a few tries to find the right person. When Hadley

failed her newborn screening, the hospital was automatically referring

families to a local rehab hospital. The audiologist on staff there knew

little about how to really do an ABR on an infant and the ENT there told

us to come back when Hadley was 2 YEARS old and could get hearing aids.

We ran as fast as we could away from them and started all over.

There are some progressive losses (like those associated with CMV) where

they believe the loss can be prevented by antibiotics or steroids. But

you really need to identify the cause first, not just treat the possible

progressive loss. And yes, you really don't want to be on steroids

unless there is a clear medical reason.

Keep posting to let us know what's going on.

Kerry

No testing?!

I went to the ENT the other day as requested by my audi to have him

schedule all testing he could - MRI, blood testing, etc.

He scheduled absolutely NOTHING? I'm a little dumbfounded? Has anyone

NOT had ANY testing done?

He said that nothing can be done anyway to prevent further HL if their

loss is indeed progressive. He said even in the case of autoimmune

disorders the risks of a life on steroids far outweigh the risks of a

progressive loss. Is this right? What now? Do I go to someone else?

Is testing necessary? I'm going to do the genetic testing but what

about the other stuff that he was suppose to do?

I'm confused....help.

[Guest guest]

to be completely honest with you, I did not take Hayley to

geneticists etc..the loss progressed btw the age of 15 month - 19

months and I had another baby on the way...still am not sure of the

cause of the HL but she was tested positive for CMV at 7, which

means nothing as so many people have had CMV at that point, and

tested for Connexin 26 and anything else Gallaudet wants to do with

Hayley's blood. There are lots of ifs, and's or but's - but right

now, communicating and education, for my daughter, has been the top

priority.

You can get a second opinion, I think - if you really want to stop

the hearing loss from progressing more. And the ENT probably has a

point about steroids. Is this ENT a pediatric one? Does he take care

of lots of people with hearing loss? If you really want to pursue

it - I would go to the nearest university medical center and ask for

an appointment there.

There is so much info on this board from parents like Jill and

Barbara whose sons had hearing loss that progressively became worse

as they got older. I think they will have good suggestions.

>

> I went to the ENT the other day as requested by my audi to have

him

> schedule all testing he could - MRI, blood testing, etc.

>

> He scheduled absolutely NOTHING? I'm a little dumbfounded? Has

anyone

> NOT had ANY testing done?

>

> He said that nothing can be done anyway to prevent further HL if

their

> loss is indeed progressive. He said even in the case of

autoimmune

> disorders the risks of a life on steroids far outweigh the risks

of a

> progressive loss. Is this right? What now? Do I go to someone

else?

> Is testing necessary? I'm going to do the genetic testing but

what

> about the other stuff that he was suppose to do?

>

> I'm confused....help.

>

[Guest guest]

Because of Hayley's hives, we sometimes need to put her on a low

dose of prednisone. I think this can cause unwanted hair (facial)

on a girl, and she certainly is more teary then. We keep her on the

prednisone only until we get the hives cleared up.

> I went to the ENT the other day as requested by my audi to have

him

> schedule all testing he could - MRI, blood testing, etc.

>

> He scheduled absolutely NOTHING? I'm a little dumbfounded? Has

anyone

> NOT had ANY testing done?

>

> He said that nothing can be done anyway to prevent further HL if

their

> loss is indeed progressive. He said even in the case of

autoimmune

> disorders the risks of a life on steroids far outweigh the risks

of a

> progressive loss. Is this right? What now? Do I go to someone

else?

> Is testing necessary? I'm going to do the genetic testing but

what

> about the other stuff that he was suppose to do?

>

> I'm confused....help.

>

>

>

>

>

> 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 am a little surprised at no testing. Not surprised about no MRI, but has

he had a ct scan? Very little is known about autoimmune hearing loss, and

usually most blood work is normal - except sometimes during a flare up. Our ent

did try prednisone - and it did actually improve her hearing for a while. That

is defiantly a difficult decision as they really can not stay on it very

long. We were lucky that my daughter had very few side affects from it, but it

did help in her diagnosis. Also just another though - prednisone has not

worked every time on her hearing - just the first time it was used. Are you

going

to a pediatric ENT?

[Guest guest]

It really depends on the ENT / Doctor. The first ENT Doctor we saw @

House Ear Institute was completely matter of fact about our daughter's

hearing loss. The Doc said that he wouldn't put his baby through any

testing and then proceeded to lecture us on " over protective new

parents. " As I was sobbing through the appointment, I didn't notice

my husband's fists clenching--he later told me he wanted to punch him!

My husband and I were dealing with a newborn and still trying to

digest the fact that our daughter had a hearing loss. The House Ear

ENT flatly told us that although it appeared that our daughter did not

have a syndrome, there was a 50% chance that the hearing loss " could

be progressive, " that we would likely never know " Why, " and that we

just needed to aid our daughter ASAP, oh and if I wanted to " help do

fundraising for the House Ear Inst they always could use the

help " . . . " have a nice day. "

We opted to see another couple of ENTs and genetic counselors. We

found a group of professionals that supported our desire to rule out

possible causes of our daughter's hearing loss and who gave us a

course of action that we are pursuing to that end.

Trust you gut, if you don't feel you are getting what you need from a

ENT/ Doctor, I urge you to find another.

[Guest guest]

Hi Sara - boy, you've been through it this year!

I would listen to your gut and seek out another ENT. As said,

finding an pediatric ENT is important. I know with both our boys, they

had CT scans although I have to tell you that they initially felt that

their loss was NOT progressive and we've found it is (at least Tom's is)

so I think even with testing, it doesn't tell you the whole story.

I'm wondering if you might contact a geneticist who would schedule these

tests for you?

Take care! Keep asking questions...

Barbara

saraandchadd wrote:

> I went to the ENT the other day as requested by my audi to have him

> schedule all testing he could - MRI, blood testing, etc.

>

> He scheduled absolutely NOTHING? I'm a little dumbfounded? Has anyone

> NOT had ANY testing done?

>

> He said that nothing can be done anyway to prevent further HL if their

> loss is indeed progressive. He said even in the case of autoimmune

> disorders the risks of a life on steroids far outweigh the risks of a

> progressive loss. Is this right? What now? Do I go to someone else?

> Is testing necessary? I'm going to do the genetic testing but what

> about the other stuff that he was suppose to do?

>

> I'm confused....help.

>

>

>

>

>

>

> 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]

Oh - and what Jill says about steroids. I think steroid use over time

is a really difficult decision and shouldn't be made lightly.

Barbara

JillcWood@... wrote:

>

> In a message dated 5/19/2006 10:14:47 A.M. Eastern Daylight Time,

> saraandchadd@... writes:

>

> I'm confused....help.

>

>

>

>

>

>

>

> Two words: Second opinion. You're not comfortable, so get another opinion.

>

> As for a life on steroids, I'd do just about anything to avoid that. I've

> been on them for extended periods of time and known people who have needed to

> be on them for much of their lives. Long term use raises the possibilities

all

> kinds of problems and it is a choice that should not be made lightly.

>

> If I suspected an autoimmune disorder in my child, I'd want to know the

> extent of that condition and then to make the medication decisions based on

> concrete information, not a sweeping generalization about living on steroids

(even

> though I agree about avoiding them).

>

> Best -- Jill

>

>

>

>

>

[Guest guest]

Unless your audi and someone else has said your child definitely has LVAS

and progressive loss, blah blah blah, your ENT seems like a moron as you

need to know WHAT kind of hearing loss your child has and if he/she needs

aids, is a CI canidated, etc.

Darn.

Robin

>

> I went to the ENT the other day as requested by my audi to have him

> schedule all testing he could - MRI, blood testing, etc.

>

> He scheduled absolutely NOTHING? I'm a little dumbfounded? Has anyone

> NOT had ANY testing done?

>

> He said that nothing can be done anyway to prevent further HL if their

> loss is indeed progressive. He said even in the case of autoimmune

> disorders the risks of a life on steroids far outweigh the risks of a

> progressive loss. Is this right? What now? Do I go to someone else?

> Is testing necessary? I'm going to do the genetic testing but what

> about the other stuff that he was suppose to do?

>

> I'm confused....help.

>

>

>

>

>

> 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]

Yes - we're back in Louisiana. NOLA? I'm in New Orleans so I'm assuming you

just meant there but is there an organization that goes by that name? The

problem is that nothing is up and running. The lady who is recommended to do

the genetic testing won't be back until the fall, LSUMC is only doing adults,

etc, etc, etc. My audi is trying to call another ENT right now for me - she's a

little dumbfounded also. Oh - and my audi didn't suggest going to Children's

right now. They are down to one ENT and the wait time is pretty extensive so

that is why we are looking elsewhere. Things are still so screwed up down here

its hard to get anything done. That's why Jake wasn't tested until last week

because my audi had to get all new equipment after the storm and yada yada yada.

Oh - Jake was asleep for the ABR. Does that affect the results? They do want

me to get a second opinion but they feel that the test is most likely accurate -

especially if I compare Hannah to Jake. Why would Hannahs be right but not his?

anyway.....

Kerry Dowling & Dan dawkdd@...> wrote:

Sara-

All of the initial testing for Hadley was ordered by a pediatric ENT at

our local children's hospital (genetic testing, EKG, renal ultrasound,

CT scan of cochleas, sedated ABR). We were referred to Children's

Hospital by Hadley's pediatrician after she failed the newborn screening

and was showing some kind of SNHL after ABRs while asleep. Our local

ENT (who we now use for routine ear care and infections and whom we

began seeing after Hadley received her aids) does not have the resources

to do these tests.

I forget, are you back in Louisiana now? If yes, did you see the

practice at NOLA already? You need to be hooked up with ENTs who are

part of a communication disorders/audiology/language/speech department

(they all use different names).

I know it may feel like you are going back to square one, but it

sometimes takes a few tries to find the right person. When Hadley

failed her newborn screening, the hospital was automatically referring

families to a local rehab hospital. The audiologist on staff there knew

little about how to really do an ABR on an infant and the ENT there told

us to come back when Hadley was 2 YEARS old and could get hearing aids.

We ran as fast as we could away from them and started all over.

There are some progressive losses (like those associated with CMV) where

they believe the loss can be prevented by antibiotics or steroids. But

you really need to identify the cause first, not just treat the possible

progressive loss. And yes, you really don't want to be on steroids

unless there is a clear medical reason.

Keep posting to let us know what's going on.

Kerry

No testing?!

I went to the ENT the other day as requested by my audi to have him

schedule all testing he could - MRI, blood testing, etc.

He scheduled absolutely NOTHING? I'm a little dumbfounded? Has anyone

NOT had ANY testing done?

He said that nothing can be done anyway to prevent further HL if their

loss is indeed progressive. He said even in the case of autoimmune

disorders the risks of a life on steroids far outweigh the risks of a

progressive loss. Is this right? What now? Do I go to someone else?

Is testing necessary? I'm going to do the genetic testing but what

about the other stuff that he was suppose to do?

I'm confused....help.

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]

In a message dated 5/19/2006 4:53:56 P.M. Eastern Daylight Time,

pcknott@... writes:

They did blood tests (not sure I remember exactly what for), tested thyroid

function (Pendred's), did an EKG that was read by a ped. cardiologist (To

rule out Long QT syndrome), did the CAT scan to look at the cochlea structure

(LVAS), did something to rule out kidney disease, and I'm not sure if that

is all they did or if my elderly memory is failing me! If I was having it

done today, I would have my child tested for CMV (if they were young enough)

because then I could be better prepared for a progressive loss. (For example,

I'd buy hearing aids that had some room to adjust if she lost more hearing

). Oh yeah, we also had eye exams done by a pediatric opthalmologist.

Sounds like everything we went thorough with Ian but I don't remember the

names of the syndromes/disorders at this point. Too many years have passed for

my feeble memory. The only name I do remember right this minute is BOR

(brachio-oto-renal) and that's why he had the kidney tests as well as the

sonogram

of all his internal organs ... just to make sure they were all where they

belonged and were the right size. Also the ophthalmologist ... I think that was

for Ushers because his pupils are slightly different sizes. (And we all see

one least every other year because glaucoma runs in my family.) We also saw

neurologists and other specialists ... an overwhelming collection of

specialists even when viewed with hindsight.

Honestly, I'd take it a bit at a time and see different specialists as the

need arises. We saw so many in such a short time that it felt like a

whirlwind. Ian began to feel like a guinea pig or lab rat. I'm thrilled that

we're

down to just the audi and then annual reviews by the others.

Also, when we chose Ian's new aids, because of his progressive loss, part of

the decision was like when you buy shoes for kids -- we chose ones with room

for growth (or loss, depending on how you want to phrase that). We wanted

ones that would take him through the next 3 years. At that point, either his

loss level or new technology will send us shopping for aids again.

best -- jill

[Guest guest]

Yes, the ENT was a pediatric one. In all honesty I don't really know the

importance of some of the testing that's why I'm asking. I just thought he

would have at least attempted to appease me!

maryemapa@...> wrote: to be completely honest with you, I did not

take Hayley to

geneticists etc..the loss progressed btw the age of 15 month - 19

months and I had another baby on the way...still am not sure of the

cause of the HL but she was tested positive for CMV at 7, which

means nothing as so many people have had CMV at that point, and

tested for Connexin 26 and anything else Gallaudet wants to do with

Hayley's blood. There are lots of ifs, and's or but's - but right

now, communicating and education, for my daughter, has been the top

priority.

You can get a second opinion, I think - if you really want to stop

the hearing loss from progressing more. And the ENT probably has a

point about steroids. Is this ENT a pediatric one? Does he take care

of lots of people with hearing loss? If you really want to pursue

it - I would go to the nearest university medical center and ask for

an appointment there.

There is so much info on this board from parents like Jill and

Barbara whose sons had hearing loss that progressively became worse

as they got older. I think they will have good suggestions.

>

> I went to the ENT the other day as requested by my audi to have

him

> schedule all testing he could - MRI, blood testing, etc.

>

> He scheduled absolutely NOTHING? I'm a little dumbfounded? Has

anyone

> NOT had ANY testing done?

>

> He said that nothing can be done anyway to prevent further HL if

their

> loss is indeed progressive. He said even in the case of

autoimmune

> disorders the risks of a life on steroids far outweigh the risks

of a

> progressive loss. Is this right? What now? Do I go to someone

else?

> Is testing necessary? I'm going to do the genetic testing but

what

> about the other stuff that he was suppose to do?

>

> I'm confused....help.

>

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]

OK - well thanks ladies. Why does it seem like I'm always the one stuck with

the morons for doctors?

I think the frustrating thing is that I expected that once we had a definite

diagnosis that everything would just roll from there. That didn't happen and I

blame it strictly on having to live here (NOLA) right now. I'm angry about it

and depressed that is the situation that we live in now. Not to be all

depressive or anything - but it just sucks that AGAIN we wait. I'm about as

impatient as a person you could meet.

And on top of it yesterday was my first meeting with the Louisiana School for

the Deaf. My brain is fried from yesterday and a little in shock since she

looked at their ABRs and said " oh wow - Hannah's more moderate/severe than

moderate " . Just one thing on top of another right.

I guess right now I'm still going through the emotions of it all and I'm

looking forward to when Jakes aids come it. At least that would be something

positive.

So thanks - and if any of these questions sound ridiculous - well I hope this

explains.

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

New Yahoo! Messenger with Voice. Call regular phones from your PC and save big.

[Guest guest]

Sara, I would definitely go to a new ENT. There are lots of things that can go

along with hearing loss that you need to know whether or not you are dealing

with. You also need to know about LVAS so that you can raise your child without

sports that involve bashing your head if that is the case. As my ENT explained

it to me, the work up will not necessarily tell you what caused the hearing

loss, and that's not really all they are looking for. It is to rule out worse

stuff than hearing loss that sometimes goes along with hearing loss. There are

articles in the ENT literature that try to inform doctors what tests should be

done on kids when hearing loss is diagnosed. This ENT doesn't seem to be well

versed in this aspect of care. I'm thinking you probably want to find out what

the cause is since both your kids are effected which usually means genetics.

[Guest guest]

The nurse in me just had to jump in here. Inhaled steroids, like those used for

asthma do not affect the whole body and are MUCH safer than oral or IV steroids

that do effect the entire body. So don't worry about the inhaled steroids!

They prevent more serious asthma crises which would cause the child to need oral

or IV steroids for a short while.

Steroids are a wonderful thing and can be used safely but that usually means

short term. Long term, they are used only for very severe autoimmune disorders

like Crohn's or Rheumatoid arthritis or lupus. In those cases, they are life

preserving and still are usually only given as short term as is possible.

Maggie has fluctuating hearing loss and it has been treated with short term,

high dose oral steroids. The really bad side effects are dose and time

dependent. So I doubt they would put a child on lifelong steroids for hearing.

But we are very glad to know that when Maggie's hearing takes a noticeable dip,

that she can take steroids for a short time and bring most of the hearing back.

I really think this ENT is just not up on pediatric concerns.

I don't know much about autoimmune hearing loss, but I will say

>that, yes, there are huge risks to being on steroids for an extended

>periods of time, let alone indefinitely. is on a low dose

>inhaled steroid for his asthma and I hate that.

>>

>> Cherie

>>

[Guest guest]

THat's terrific that he was asleep for the ABR - other wise he'd have to be

sedated. Do you have a definite diagnosis of autoimmune - I didn't think so but

we all sort of got off on that tangent.

[Guest guest]

Oh ...noooo. no definite diagnosis. That was what the visit to the ENT was. We

were just trying to rule things out....at least the things that might require

other medications or would cause other problems.....I asked about the autoimmune

just for more info becasue I had no idea it could cause HL.

pcknott@... wrote: THat's terrific that he was asleep for the ABR -

other wise he'd have to be sedated. Do you have a definite diagnosis of

autoimmune - I didn't think so but we all sort of got off on that tangent.

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]

Neither of my kiddos have had ANY testing. Hannah had blood or urine work -

can't remember which one where they tested for syphlis and diabetes. All was

negative.

soccrnurz1@... wrote: I am a little surprised at no testing. Not surprised

about no MRI, but has

he had a ct scan? Very little is known about autoimmune hearing loss, and

usually most blood work is normal - except sometimes during a flare up. Our ent

did try prednisone - and it did actually improve her hearing for a while. That

is defiantly a difficult decision as they really can not stay on it very

long. We were lucky that my daughter had very few side affects from it, but it

did help in her diagnosis. Also just another though - prednisone has not

worked every time on her hearing - just the first time it was used. Are you

going

to a pediatric ENT?

[Guest guest]

Two kids with hearing loss kind of ups the ante about the medical evaluation.

Makes it more probable that the cause is genetic, especially since it is in both

boy and girl. For years, research studies only wanted to test people where two

or more family members had hearing loss. No one recommended genetics on Maggie

since she was the only one. And we weren't really worried so much about what

caused the loss. So it wasn't until 5 or 6 years after her diagnosis that we

found a study that would do genetics when only one family member has hearing

loss. I know of two deaf parents who were shocked and amazed when their child

was born deaf since both of their hearing loss was blamed on meningitis - turned

out BOTH parents had a genetic hearing loss. So you might want to do the

genetics so your kids will know if they can pass it on or not.

We did have a thorough work up to look at other things that could accompany

hearing loss. We hadn't done anything and I mentioned it to the audiologist

about how I didn't think we would bother with all that since we didn't care what

the cause was. But she explained that everything but the genetics was also to

see if there were other problems that go along with hearing loss so that made me

realize we really did need to get it done. They did blood tests (not sure I

remember exactly what for), tested thyroid function (Pendred's), did an EKG

that was read by a ped. cardiologist (To rule out Long QT syndrome), did the CAT

scan to look at the cochlea structure (LVAS), did something to rule out kidney

disease, and I'm not sure if that is all they did or if my elderly memory is

failing me! If I was having it done today, I would have my child tested for CMV

(if they were young enough) because then I could be better prepared for a

progressive loss. (For example, I'd buy hearing aids that had some room to

adjust if she lost more hearing ). Oh yeah, we also had eye exams done by a

pediatric opthalmologist. We still do that every 3 years. I think we are due!

Knowing about the LVAS is also good because you can prepare for progressive loss

and try to prevent bumps to the head. Maggie is a swimmer and her second best

stroke is back stroke and has she has crashed headfirst at full speed into the

wall several times - I know she doesn't have LVAS so I don't freak out. If she

had LVAS I'd probably not want her to do back stroke!

So the medical evaluation does two things, 1. looks for the cause and 2.

Looks for other things that may be associated with the hearing loss. So that

makes it even more odd that he wouldn't recommend any further medical follow up.

We've been reading a series in the Atlanta Journal Const. about hospitals in New

Orleans during Katrina. It helps me to understand what you have said about

still not having access to doctors etc like you used to. And there was a great

story about a boy whose dad is a NO fire captain but the rest of the family has

spent the past school year in Atlanta, anyways the boy oldest boy graduated

high school and it was a sweet story. But those of us who haven't been there

probably just can't imagine how things are still so disrupted.

[Guest guest]

LVAS could indicate progressive loss. I didn't realize CMV did. ???? LVAS

has more to do with the vestibular aqueducts and endolymphatic sacs than it

does the cochlea, I believe. Checking the cochlea was probably for Mondini

Malformation.

>

> In a message dated 5/19/2006 4:53:56 P.M. Eastern Daylight Time,

> pcknott@... writes:

>

> They did blood tests (not sure I remember exactly what for), tested

> thyroid

> function (Pendred's), did an EKG that was read by a ped. cardiologist

> (To

> rule out Long QT syndrome), did the CAT scan to look at the cochlea

> structure

> (LVAS), did something to rule out kidney disease, and I'm not sure if

> that

> is all they did or if my elderly memory is failing me! If I was having it

>

> done today, I would have my child tested for CMV (if they were young

> enough)

> because then I could be better prepared for a progressive loss. (For

> example,

> I'd buy hearing aids that had some room to adjust if she lost more

> hearing

> ). Oh yeah, we also had eye exams done by a pediatric opthalmologist.

>

>

>

> Sounds like everything we went thorough with Ian but I don't remember the

>

> names of the syndromes/disorders at this point. Too many years have

> passed for

> my feeble memory. The only name I do remember right this minute is BOR

> (brachio-oto-renal) and that's why he had the kidney tests as well as the

> sonogram

> of all his internal organs ... just to make sure they were all where they

>

> belonged and were the right size. Also the ophthalmologist ... I think

> that was

> for Ushers because his pupils are slightly different sizes. (And we all

> see

> one least every other year because glaucoma runs in my family.) We also

> saw

> neurologists and other specialists ... an overwhelming collection of

> specialists even when viewed with hindsight.

>

> Honestly, I'd take it a bit at a time and see different specialists as

> the

> need arises. We saw so many in such a short time that it felt like a

> whirlwind. Ian began to feel like a guinea pig or lab rat. I'm thrilled

> that we're

> down to just the audi and then annual reviews by the others.

>

> Also, when we chose Ian's new aids, because of his progressive loss, part

> of

> the decision was like when you buy shoes for kids -- we chose ones with

> room

> for growth (or loss, depending on how you want to phrase that). We wanted

> ones that would take him through the next 3 years. At that point, either

> his

> loss level or new technology will send us shopping for aids again.

>

> best -- jill

>

>

>

>

[Guest guest]

Is an ENT the right person to be going to? Or should I seek out individual

specialists? I know that a lady from LSUMC is interested in putting them in a

study when their pediatric audi department gets up and running in the fall - but

I don't know the specifics and I don't know if THEY will do testing?! So

confusing.

JillcWood@... wrote: In a message dated 5/19/2006 4:53:56 P.M. Eastern

Daylight Time,

pcknott@... writes:

They did blood tests (not sure I remember exactly what for), tested thyroid

function (Pendred's), did an EKG that was read by a ped. cardiologist (To

rule out Long QT syndrome), did the CAT scan to look at the cochlea structure

(LVAS), did something to rule out kidney disease, and I'm not sure if that

is all they did or if my elderly memory is failing me! If I was having it

done today, I would have my child tested for CMV (if they were young enough)

because then I could be better prepared for a progressive loss. (For example,

I'd buy hearing aids that had some room to adjust if she lost more hearing

). Oh yeah, we also had eye exams done by a pediatric opthalmologist.

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

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[Guest guest]

,

Prednisone is AWFUL in the way it plays with our hormones. So either you

get super moody girl or super witchy girl. When I was on it as a teenager

(allergy related) I was both. I now try to stay as far away from it as possible

because it plays with my moods so much.

Debbie

maryemapa@...> wrote:

Because of Hayley's hives, we sometimes need to put her on a low

dose of prednisone. I think this can cause unwanted hair (facial)

on a girl, and she certainly is more teary then. We keep her on the

prednisone only until we get the hives cleared up.

Some men see things as they are and ask why. Others dream things that never were

and ask why not. G.B Shaw

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