Re: Accuracy of ABR - kinda long, sorry :)

[Guest guest]

Hi Leigh,

Truthfully I have no experience with a baby with a heraing loss so I

don't know if this will help. I do have one daughter with a fluctuating now

profound loss. Her older sister was just diagnosed as well. Her hearing

fluctuates so often it really depends on the day, literally she can have normal

hearing one day and a mild-mod loss the next, then back to normal. She also had

normal abr's so now they fell that was one of her good hearing days. Maybe a

hearing loss trial would be a good thing just to see if they help and if you

notice an improvement. That is what we are doing with my daughter. She is trying

digital aids with 3 programs, of course the biggest difference is she is old

enough to change the programs herself depending on her hearing.

Good luck,

[Guest guest]

Ok I first would like to know if your daughter has had an audiogram lately

and how she did if so. Second I want to make a point that what you are

talking about while confusing may not be an inacuracy. In other words it

may be that your daughter has a condition such as cortical deafness where

the brain isn't processing the sound and that she doesn't usually respond to

most sounds because it is just noise. People with this disorder have

anywhere from normal audiograms to profound loss, but that doesn't mean they

don't hear the sound. So in other words she may be hearing the sound but

because all it is is noise like rushing water or static, she doesn't respond

to it. she may hear and understand better at different dB levels. You

could try a hearing aid but it may or may not help. I am interested also in

finding out what the ABR showed as far as the timing of the sound goes.

Were her latencies normal? My son has normal audiograms but doesn't respond

to most things in the environment, so in other words he acts profoundly deaf

yet his audiograms are normal, but only if they point out the toys first.

if they don't first show him the moving toy he won't respond to the sound,

but as soon as he knows that when he hears a sound they make a toy flash he

starts responding to the sound. Why? Because suddenly the sound that is

just noise that he usually hears a lot of throughout the day because

everything sounds like that has a benefit to him. The sound doesn't mean

anything but he learns that if he looks they will flash a toy for him.

Sometimes he looks when there is no sound too. the ABR shows severe delay

in his latencies which again show that his sound is distorted, and he only

hears to 30 dB in the high frequencies. So there are conditions where you

can have anywhere from a normal to a profound loss in the booth and a

perfectly normal ABR but yet they can hear which is why the ABR shows that

her hearing is normal. She may be able to hear the sound but it may not

mean anything to her so she doesn't respond to it until it is really really

loud. Do you understand? That doesn't mean the ABR is inaccurate it just

means that your daughter may have something more cortically based then the

actual ear. It causes the same result though which is they have little

comprehension of sound. The sound also may be more clear in the higher dB

levels.

>

>Reply-To: Listen-Up

>To: Listen-Up

>Subject: Accuracy of ABR - kinda long, sorry

>Date: Fri, 13 Feb 2004 15:16:17 -0000

>

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[Guest guest]

Hello Leigh,

I have just rejoined the list after being away for some time. It is

great to be back. :-) I am the mom of three kids, Camille,

and Kendra who is profoundly deaf and has had a multitude of medical

difficulties, now mostly resolved. She is also considered to have

autism.

I noticed something in your e-mail that caught my eye. If your daughter

is being considered for an evaluation for PDD while the processing or

other issues are being thought about, there is a condition you may wish

to investigate. Have you ever heard of hyperlexia? This condition

often results in early reading and a fascination with letters. You

mentioned almost an obsession with the alphabet and some advanced skills

in other areas, which raised my curiosity about the possibility of this

condition.

Some children with hyperlexia are on the autism spectrum, but it is not

a definite requirement in this diagnois. Sometimes children with this

condition read before they speak. They often have a fascination with

letters or numbers. They can have an inordinate amount of difficulty

acquiring verbal language, and in some cases they may appear deaf. You

can read more about hyperlexia at http://www.hyperlexia.org

Our daughter has some of the characteristics of this condition, but not

all. She could read printed words before she communicated in sign. In

fact, language is still the area in which she still requires direct

teaching and assistance.

You are wise also to be seeking information about the nature of any

possible hearing loss and confirming the results of the ABR.

Southern California

Message: 8

Date: Fri, 13 Feb 2004 15:16:17 -0000

Subject: Accuracy of ABR - kinda long, sorry

Hi Everyone

Havent posted in a really long time. My name is Leigh and my daughter

is Ellie, 27 months. Last time I posted she was about 18 months and had

been testing in the booth at about a 40-60 db loss - they assumed it was

sn in nature...Two different booth tests reflected this loss, however in

one of them she did have some middle ear fluid. She was completely

clear of middle ear fluid for the second and more comprehensive test

done at our local Children's Hospital. Her ABR however demonstrated

that she had perfect hearing. I left feeling very confused as the

middle ear fluid on top of a mild/mod sn hearing loss really explained

everything we were seeing with her (never responded when we called from

behind, never used speech to get what she wanted or needed and spoke

very little). We began working with Early Intervention the week

following the ABR and Ellie made amazing progress over this past summer

with the number of words she has (and BTW we work with one of the

therapists who works in the deaf/HOH program - she agreed to take my

daughter on due to her previous documented hearing loss, and she's been

truly wonderful and I attribute our daughter's success to her methods of

re-engaging her...she had really been in her own little world)...her

enunciation is fairly good and she can identify just about anything

under the sun when she wants. HOWEVER, our biggest concern (and she

seems to be an enigma to most who meet her) is that she still cannot

(and we dont believe it's " wont " ....in other words this isnt a " two "

thing as some folks try to tell me)follow the simplest one-step

commands. We know she's hearing and she's been free from middle ear

fluild for nearly one year. I hadnt even thought about hearing loss as

something that might be still going on, until the other day when our

therapist said " this goes against much of what we know in deaf

education, but it just seems like a low-level hearing aid might be of

some assistance to her " .....I should also add, however, that Ellie has

shown some other odd behavior - for awhile, obsessing about the

alphabet, then numbers and now shapes. She can count to 20 and by

two's, knows the entire alphabet inside and out, and every shape under

the sun, but when asked to get a pair of shoes, might bring you the

toothbrush. She'll be eval'd by someone Mon who specializes more in PDD

type diagnoses and processing disorders - she's got so many traits of

CAPD EXCEPT for the sequencing/memorization (which is supposedely not a

strong suit amongst those with CAPD)...I also might mention that our

beautiful daughter came to us thru adoption so we didnt have the

privilege of sharing her first 6 months, but do have really good info on

her birthmom, who supposedely had excellent medical care during her

pregnancy, and Ellie was born with no probs whatsoever and was 8.6

lbs..On one of my other lists - an developmental delay list for adopted

children, someone did mention that despite the ABR continually

indicating that her son's hearing in one ear is fine, he repeatedely

tests poorly in the booth and they have seen tremendous improvement once

he was aided and in therapy. Anyway, I'm just curious if anyone has

seen inaccuracies with the ABR...It was done at one of the most

reputable Children's Hospitals in CA, but I realize mistakes happen even

at the best facilities. Any thoughts? After Mondays' eval, we'll

probably be seeing a Dev. Peds and possibly a neurologist, and repeating

the booth test with our therapist as second tester....just want to cover

all our bases. Our daughter is just the sweetest, most precious little

one and we want her to have the best. And she's so amazingly talented

in so many areas of life (her athletic abilities are incredible...her OT

couldnt believe all she could do for her age), but if she cant follow

directions, things are gonna be tough. Anyway, thanks so much for

listening and any ideas about the ABR would be much appreciated.

Leigh

Proud mom to Jee Hoon (3) and Elisha Sung Hee (2) both born in

Korea

[Guest guest]

Hi...I'm the mom that Leigh refers to in her email (the mom from the

developmental delays yahoogroups). BTW Leigh...I'm still trying to

pull Sammy's recent audiogram and his ABR, but, uh lets just say,

I'm in a disorganized state right now ;-)

Here's what I don't get about the ABR, and hopefully someone could

help me with this......When Sam had his ABR in Fall 2002, it showed

profound loss in the left ear, and " essentially " normal hearing in

the right. The audiologist basically told us, " he'll be fine...he

has one good ear " and sent us on our way. We had the test done at a

very good hospital with pediatric audiology team (The Cleveland

Clinic) and we assumed they knew what they were doing. For the ABR,

he was tested in the 500-4000HZ range.

Sam wasn't fine, though. And we persisted. He's now in AV Therapy

with Carol Flexer's students at the University of Akron. When Dr.

Flexer does the booth test, she tests Sam in the 250-6000HZ range,

and it turns out...the ear that the ABR showed as essentially normal

is, but ONLY in the ranges they tested during the ABR. Sam has a

moderate hearing loss at 250HZ, 20-25 db thresholds from 500-4000HZ,

and then a severe loss at 600HZ. Given that so many speech sounds

are in the very low and high frequencies, it just ASTOUNDS me that

the ABR didn't test there. Why is that? I feel like I wasted

worry, time, resources and money and worst of all put my son under

sedation for a test that was incomplete.

Leigh mentioned that her daughter's ABR tested in the same

frequencies, so my totally amateur guess was that maybe Ellie is

like Sam and has the odd shaped hearing loss that wasn't detected in

the ABR, but is being picked up in real life situations?

If anyone has any incite into this testing discrepency, I'd love toe

hear more.

Thank you!