testing

September 20, 2000

> One of the tests that has been suggested is a standard

> I.Q.(WISC).

Here's some info on using the WISC with deaf/hoh:

http://gri.gallaudet.edu/~catraxle/INTELLEC.html#wechsler

You might want to visit Celeste's article: Educational Evaluation of Deaf

Children

http://www.listen-up.org/rights/evals.htm

Kay

September 20, 2000

At 04:35 AM 9/20/00 +0000, you wrote:

>

>Hello Everyone!

>

>What suggestions would you give regarding types of testing that

>should be completed before my son is mainstreamed in his home school

>next year. One of the tests that has been suggested is a standard

>I.Q.(WISC). What types of accommodations are made (if any) on these

>tests for HOH students? My main concern is that he be tested using

>standard testing instruments in order to get a true picture of his

>abilities relative to his " typical " peers.

Be careful with that. You want to know both...normed against deaf and also

normed against hearing. Both sets of data are very valuable.

Theres a whole slew of tests available. Which ones used depends on the age

and abilities of the child. e School uses a battery of tests during a

Comprehensive Educational Evaluation. I strongly suggest that you have one

done before he mainstreams, whether at e or somewhere else.

Chris

January 17, 2001

Ya know, this question came to my mind as well when the genetics issues came up

here a few days ago. My son was diagnosed at birth (almost 4 yrs ago) and all

they told me was, we may never know why and it really isn't important. Since

then we have had and improvement in hearing at age two AND possibly (my opinion)

a fluctuating loss. I realize now it IS important because as someone said

earlier....what about my kid's kids???????? Are they or aren't they? I think the

MRI is the way to go for starters on this one, Kim. I might go that route as

well.

in Texas

, 7 1/2, cowgirl, and , 3 3/4, mild/moderate, phonak pico fortes

____________________Reply Separator____________________

Subject: Testing

Author: Listen-Upegroups

Date: 01/17/2001 1:12 PM

Hi everyone. I want you all to know how valuable you

are to me!

Question? Should I have all the testing possible for

my son even though he was diagnosed over 6 years ago?

we never had any testing and now after the sudden loss

I want to find out why. All the Dr would agree to was

a MRI no CT and no blood work. What do you think?

Kim

Mom to Dylan 9

__________________________________________________

January 17, 2001

After 5yrs of no testing at all (i didnt know better then) we did them all

finally this last year. We still dont know why, but we do know why not

now....lol. It made us as parents feel better, althou Toby was hoping to

find an answer.

Betty

> Question? Should I have all the testing possible for

> my son even though he was diagnosed over 6 years ago?

> we never had any testing and now after the sudden loss

> I want to find out why. All the Dr would agree to was

> a MRI no CT and no blood work. What do you think?

> Kim

> Mom to Dylan 9

January 17, 2001

Oops, i should have said we had all the tests but the genetics test done.

Im still not sure if/when we will do that one. I kinda think that is

partially up to Toby since hes 14, i just havent brought it up yet.

Betty

> Ya know, this question came to my mind as well when the genetics issues

came up

January 17, 2001

Hi-

Sorry I'm jumping in hear as well. I definitely think it is worth exploring, and

an MRI is at least a place to start. We have had MRIs done on both of our kids

now (Delaney is 4, and is only 10 months). The MRIs gave us some

information that has been helpful. Our kids have LVA, which means that we will

be keeping really close tabs on their hearing because of the tendency for this

to be progressive. Especially with (the youngest).

Our ENT also recommended doing some Genetic testing as a follow-up. I think

we'll go ahead and pursue this. I'd like for our kids to have as much

information as possible about LVAS.

Anyway- Just my thoughts. And I don't think it's ever too late to do the

testing......

Thanks!

January 17, 2001

All the Dr would agree to was

> > a MRI no CT and no blood work. What do you think?

> > Kim

Kim,

When it looked like no one else wanted to investigate for me, our

pediatrician offered to order a CT or MRI himself. Of course, once I found

our new ENT, that wasn't necessary but this is another route to go.

Carol- mom to . 4.8

near Seattle

January 18, 2001

Kim,

I can't understand why your doctor wouldn't do what you want. He should

take every suggestion you have and think about it further. If you would

like to investigate this, he should be just as excited as you are. I'm

sorry but, we never had this problem, our doctors were always very open.

Donna

Mother of ny 5

Re: Testing

> All the Dr would agree to was

> > > a MRI no CT and no blood work. What do you think?

> > > Kim

>

> Kim,

>

> When it looked like no one else wanted to investigate for me, our

> pediatrician offered to order a CT or MRI himself. Of course, once I

found

> our new ENT, that wasn't necessary but this is another route to go.

>

> Carol- mom to . 4.8

> near Seattle

>

> 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.

>

January 18, 2001

Thanks for your response.

I've already made an appointment with another DR. I

hope this one will work out better.

Kim

--- Fish wrote:

> Kim,

> I can't understand why your doctor wouldn't do what

> you want. He should

> take every suggestion you have and think about it

> further. If you would

> like to investigate this, he should be just as

> excited as you are. I'm

> sorry but, we never had this problem, our doctors

> were always very open.

> Donna

> Mother of ny 5

> Re: Testing

>

> > All the Dr would agree to was

> > > > a MRI no CT and no blood work. What do you

> think?

> > > > Kim

> >

> > Kim,

> >

> > When it looked like no one else wanted to

> investigate for me, our

> > pediatrician offered to order a CT or MRI himself.

> Of course, once I

> found

> > our new ENT, that wasn't necessary but this is

> another route to go.

> >

> > Carol- mom to . 4.8

> > near Seattle

> >

> > 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.

> >

>

__________________________________________________

January 18, 2001

> I can't understand why your doctor wouldn't do what you want. He should

> take every suggestion you have and think about it further. If you would

> like to investigate this, he should be just as excited as you are

Although I'm pretty cynical when it comes to this subject (see some of my

former posts--LOL!), I still thought I would point out that in this age of

insurance-and-HMO-controlled-health care, some doctors' hands are tied. The

companies who call the shots have certain protocols which must be

followed...or no payment. Perhaps MRI's are cheaper at some facilities and

therefore, that's the " allowed " test, even when a CT might be more

appropriate, etc. Or NO further testing is allowed because there isn't a

good enough reason.

I know I dealt with this a lot in my hospital days (as an occupational

therapist). It's frustrating, but that's just the way it is. That's why I

think it's helpful if we go in with good reasons to justify additional

testing. In our case, I suspected EVAS (LVA) and and would have paid for

the test myself if need be. (I didn't have to because my pediatrician gave

me a referral to the hospital audiology unit.) But a lot of ENT's and

audiologists don't even seem to be familiar with the condition (which was

really only identified about 20 years ago, I think) and do seem to believe

that there are few conditions which can cause progressive hearing loss. We

need to educate them!

Carol - mom to

near Seattle

January 18, 2001

Hi

Jump in any time and don't apoligize!

I agree. I feel better with all you behind me. Thanks

for the support.

Kim

--- wrote:

> Hi-

>

> Sorry I'm jumping in hear as well. I definitely

> think it is worth exploring, and an MRI is at least

> a place to start. We have had MRIs done on both of

> our kids now (Delaney is 4, and is only 10

> months). The MRIs gave us some information that has

> been helpful. Our kids have LVA, which means that we

> will be keeping really close tabs on their hearing

> because of the tendency for this to be progressive.

> Especially with (the youngest).

>

> Our ENT also recommended doing some Genetic testing

> as a follow-up. I think we'll go ahead and pursue

> this. I'd like for our kids to have as much

> information as possible about LVAS.

>

> Anyway- Just my thoughts. And I don't think it's

> ever too late to do the testing......

>

> Thanks!

>

> [Non-text portions of this message have been

> removed]

>

__________________________________________________

January 18, 2001

Waht did all the testing consist of? I want to make

sure I get everything that coould help.

Kim

--- The Krauses wrote:

> After 5yrs of no testing at all (i didnt know better

> then) we did them all

> finally this last year. We still dont know why, but

> we do know why not

> now....lol. It made us as parents feel better,

> althou Toby was hoping to

> find an answer.

> Betty

>

> > Question? Should I have all the testing possible

> for

> > my son even though he was diagnosed over 6 years

> ago?

> > we never had any testing and now after the sudden

> loss

> > I want to find out why. All the Dr would agree to

> was

> > a MRI no CT and no blood work. What do you think?

> > Kim

> > Mom to Dylan 9

>

__________________________________________________

January 18, 2001

In our case, I suspected EVAS (LVA) .

Why did you suspect this?

Kim

--- CBenecke wrote:

>

> > I can't understand why your doctor wouldn't do

> what you want. He should

> > take every suggestion you have and think about it

> further. If you would

> > like to investigate this, he should be just as

> excited as you are

>

> Although I'm pretty cynical when it comes to this

> subject (see some of my

> former posts--LOL!), I still thought I would point

> out that in this age of

> insurance-and-HMO-controlled-health care, some

> doctors' hands are tied. The

> companies who call the shots have certain protocols

> which must be

> followed...or no payment. Perhaps MRI's are cheaper

> at some facilities and

> therefore, that's the " allowed " test, even when a CT

> might be more

> appropriate, etc. Or NO further testing is allowed

> because there isn't a

> good enough reason.

>

> I know I dealt with this a lot in my hospital days

> (as an occupational

> therapist). It's frustrating, but that's just the

> way it is. That's why I

> think it's helpful if we go in with good reasons to

> justify additional

> testing. In our case, I suspected EVAS (LVA) and

> and would have paid for

> the test myself if need be. (I didn't have to

> because my pediatrician gave

> me a referral to the hospital audiology unit.) But

> a lot of ENT's and

> audiologists don't even seem to be familiar with the

> condition (which was

> really only identified about 20 years ago, I think)

> and do seem to believe

> that there are few conditions which can cause

> progressive hearing loss. We

> need to educate them!

>

> Carol - mom to

> near Seattle

>

__________________________________________________

January 18, 2001

Hello!

Jumping in again. If your child has a downward sloping, severe-profound high

frequency loss (possibly sudden onset), it could be indicative of EVA/LVA. We

had testing done because our Audiologist recommended it. With our second child,

we again suspected LVA (mainly because this is what our older daughter has). She

did not pass her newborn screening, and has had a fluctuating high-frequency

loss (At this point we were pretty certain).

They agreed that an MRI was in order (and the reason they chose an MRI in her

case, is that the University has highly sensitive MRI equipment, that works well

with newborn ears. Versus a CT scan, which would not be able to properly assess

her ears (only because of our hospital's equipment).

Hope that helps a bit!

January 18, 2001

We had an MRI, CT Scan and Blood tests that tested for different diseases.

Not sure what the blood tests were. They were numerous and had big

names....lol.

Betty

> Waht did all the testing consist of? I want to make

> sure I get everything that coould help.

> Kim

January 18, 2001

> In our case, I suspected EVAS (LVA) .

> Why did you suspect this?

> Kim

>

Kim,

When we found out about ' hearing loss, I must have spent about two

weeks straight from about 9 at night until 1 or 2 in the morning, just

researching online. Sites like Listen-up had links to other sites which

showed sample audiograms, discussed causes of hearing loss, etc. I also

read every post made to this list and noticed some people mentioning their

kids' progressive losses and the tests they had done. Also, had

" passed " a hearing screen when he'd been younger and he had also had more

complicated words (like dinosaur names) when he was two which he couldn't

pronounce when he was four. I just thought I was seeing a pattern.

My doctor discounted most of this and just said it was " mother's intuition. "

Whatever it was, I am glad we know what it is and that there are some

precautions we need to take.

We are still researching the genetic component (specifically connexin 26)

but not as agressively. We just think this is information that my husband

and I (and when he's older) should have.

Carol - mom to , 4.8, bilateral sensorineural mild to severe HL

near Seattle

May 23, 2001

Hi Vicki,

They did the ultra sound on my thyroid and found numerous nodules. (No

wonder I've been so fatigued lately!) I won't know what they're going to do

for a week or so, but it could be just medication to shrink them. Thanks for

asking! Annette

Testing

Hi Annette... how did your testing go today? Any news on the results?

Hope you're doing much better today.

Hugs

Vicki

May 23, 2001

Good Morning Everyone....

Hi Annette... well, at least they now know what the heck it is causing

your fatigue. I hope they can get you on the proper meds soon to get

your energy back. Wonder what they use to shrink the nodules. Did he

say this was somthing tha is commen for myositis patients?

I'm currently talking to an individual that has all the signs of

myositis but the doctors won't listen to her. She's now been to 3

doctors. She saw a Rheumy yesterday that came highly recommended by

another individual. After she saw this rheumy she walked out of his

office, once again, disappointed and disgusted. Now she's going to try

to get a referral so she can go to the MDA. In one month her CPK is now

climbing to over 200.

I don't understand doctors, yet I went through the same thing. What is

so darn hard about listening to the patient? A doctor can learn so much

more by just listening. When an individual has trouble breathing...

why is it just passed off as if it's nothing? Everything you read about

having problems breathing... they tell you to contact your doctor right

away. Did the doctors miss this subject in medical school? Because

when you do mention the breathing issue they don't seem very worried

about it.

After listening to this individual I wondered how many other people have

myositis and are being diagnosed as FM, CFS or something else. I

wondered how many children are being misdiagnosed. I'm sorry to rant

on but it makes me so angry that doctors have taken on this " Go home

and take an aspirin " attitude. I've decided to compose a letter and

send it to our major newspapers in Calif. I'm sure it won't move the

doctors out here that have there own practice but it might help some

people who, at the moment, think their going crazy... we've all been

there.

Ok, I've said my piece....lol

... when is your appt. with the new doctor?

Hope everyone else is having a good day and if anyone has anything they

think I should add to my letter, please feel free to send it to me. I

need all the help I can get to make this letter strong and to the point.

Enough is enough!

Hugs to everyone...

Vicki

May 23, 2001

Vicki... You're absolutely right about doctors not listening. They had me

making appointments with psychologists and psychiatrists before I finally

found someone who listened and gave it some thought. I think the letter idea

is a good one. Doctors do read newspapers, I hope. Annette

RE: Testing