Re: Introduction: Ruby's father

[Guest guest]

Hi to another neuroblastoma parent...

Are you also on the ACOR neuroblastoma list? Did you get here by following

the

link to this list that I posted there? Just curious....

My son Elias was dx'ed with Stage IV neuroblastoma when he was just shy of

2 years old. He is now 4 and has been NED for 28 months. He was treated

at Memorial Sloan-Kettering. What stage was Ruby? A 4s? Which

protocol did she do? Which hospital?

Have you had a complete neuropsych eval done? At MSKCC, they have all the

kids do them when they switch over to the late effects team. We had it done

much earlier though. I think every kid who has been through neuroblastoma

treatment is at high risk for learning problems - because all of the

hospitalizations,

treatments, side effects, and everything just add up. I would fight the 504

classification tooth and nail.

In Elias's evals, which were done when he was just about to turn 3, he was

found to have low muscle tone and fatigue. He was about a year delayed in

gross and

fine motor skills. His cognitive abilities were normal-to-advanced, but his

ability to learn, and to show what he had learned, were clearly impacted by

his motor skill problems. But more seriously, he also was found to have

bilateral moderate-to-severe SN hearing loss in the middle and high

frequencies.

As you probably know, most kids who do the high risk neuroblastoma protocol

end up with this type of hearing loss, so it was not a surprise to us.

So Elias now has an IEP, and gets PT, OT, speech therapy, and a SEIT

(special

education itinerant teacher) in his preschool. He will be heading to

kindergarten

next year. He uses an FM system in addition to his hearing aids, and loves

the FM system. It seems to make a big difference for him when he is

in his noisy preschool classroom.

Also, do you have a copy of Candlelighters book " Educating the Child With

Cancer : A Guide for Parents and Teachers " ? You can get it for free from

them if you join. It is full of useful info. Unfortunately, our kids are at

high

risk for educational problems all the way down the line. Also, if you are

on the ACOR list, did you get a copy of Shirley's " letter to the teachers " ?

It is a great letter for educating teachers about hearing loss problems.

Bonnie

mom to

Elias, 2/15/02, dx Stage IV NB 12/03, 5 rounds chemo on N8 at MSKCC,

NED 5/04, 13 rounds 3F8 antibodies and no HAMA ever, off treatment

6/06

and to Malachi, 3/1/00, my little pundit.

>

> Hello All-

>

> I have been lurking for a while, but now it's time to introduce

> myself and ask for some advice. My daughter, Ruby, is five years

> old. I am here because she has high-frequency hearing loss in both

> ears as a side effect of chemotherapy and radiation.

>

[Guest guest]

Hi - Wow, your Ruby sounds like a true gem and she sounds lucky to have

the parents that she does. I'm kind of confused by your description of her

loss. Is the loss profound (100 db+) above 4-5K or is the only place there is

loss from 4-5K and up? What is the cause of all the noise in her classroom? Is

it kid noise? Noisy bad acoustics type of a room? Is the class out of control

or noisy behavior wise? The fact that Ruby is asking other kids questions about

directions lets you know she is having some serious trouble hearing in this

classroom. An FM or perhaps even a soundfield might be something to consider.

Sometimes, usually depending on the teacher, a soundfield can quiet down a

class, but with the wrong teacher, the kids just get louder so the soundfield

just adds to the cacophony. Perhaps an personal FM with low or no gain would

benefit her. They are used for kids without hearing loss too, kids with

auditory processing issues etc. Even kids with unilateral and " minimal " (16-25

dB) losses have nearly a 50% chance of having to repeat a grade, so the

cumulative effects of not hearing what is going on can be huge. Kids ability to

understand speech in noise is also very variable. My daughter comprehends nearly

100% in a quiet environment but only comprehends 40% in noise. Most of the

grammatical information in English like tense, plurality and possession happen

using the very quietest and highest frequency sounds like s and t. So if the

hearing loss is affecting her ability to hear ONLY these letters, it will still

affect her quite a bit. And the noise in the classroom will drown out these

sounds first as well. Do you have a good pediatric or school audiologist who

could do some functional testing of Ruby in and out of noise? in GA

[Guest guest]

Bonnie - can you share Shirley's letter to the teachers?? Thanks,

[Guest guest]

This is someone who isn't on this list, so I would want to ask her

permission, and also make sure that

everything that is identifying is out of the letter. She has been doing this

for many years, and her

main point was that you have to educate the teachers every year, year after

year.

>

> Bonnie - can you share Shirley's letter to the teachers?? Thanks,

>

>

>

[Guest guest]

This is someone who isn't on this list, so I would want to ask her

permission, and also make sure that

everything that is identifying is out of the letter. She has been doing this

for many years, and her

main point was that you have to educate the teachers every year, year after

year.

>

> Bonnie - can you share Shirley's letter to the teachers?? Thanks,

>

>

>

[Guest guest]

In a message dated 9/20/2006 9:20:51 A.M. Eastern Standard Time,

elbert@... writes:

We have a meeting this

Friday to discuss Ruby's IEP with the school. Despite her paralysis

and other issues, I suspect they are going to want to give her a 504

Plan rather than an IEP and I am, honestly, not sure what I want from

them. The physical therapists they have provided to date have not

inspired much confidence, so that might not be worth pursuing. But

Ruby still tires very easily and needs extra time and accommodation

to get places and be involved in things. She is clearly not to the

point of needing an FM system, but should we be demanding seating

near the teacher and anything else like that?

A 504 plan may be just what Ruby should have. An IEP is for a child who has

learning disabilities, and while hearing loss is a disability, it isn't always

a " learning " one. It is because of her paralysis and other issues (not

despite them) that they are considering the 504 classification. That is the

type

of thing a 504 was initially designed to address.

You should probably be requesting a variety of things, but I would start

with asking for a full assessment by a TOD or D/HOH facility that knows about

hearing loss in children. Our kids are masters at developing coping skills that

can take them pretty far. But when they start to fail, they fail quickly.

And as long as our kids not failing, the schools are not going to step in and

try to figure out what they need. There are just too many kids with needs and

the ones who obviously need help are going to be the ones who get it first.

Our son Ian is bright, but no genius -- don't get me wrong, the mom in me

thinks the sun rises and sets on the boy, but the truth is he is a strong but

somewhat average student. And for a kid with a hearing loss, that can be an

amazing feat. (When I consider the issues that Ian deals with daily, being a

high 80s to low 90s student is quite an accomplishment!) But my point in

bringing up his academic abilities is because Ian is one of the kids who was

falling through the cracks.

Not quite a bad enough student to warrant attention or intervention, but

enough struggling that by the end of 2nd grade it was suggested we retain him.

I had to fight to get him tested so we could figure out if there was a

processing speed problem (there was) and once his issues were identified, fight

to

get him classified. Not because they don't classify kids, but because he was

very borderline and they wanted to retain and/or offer readi-made solutions

before hiring D/HOH services, which are more expensive.

My point here is that it's not easy to determine what these kids are

missing. We know them better than the schools and we parents aren't qualified.

We

see something is missing, but often can't pout our finger on it.

So I would request an assessment be done by D/HOH professionals. That way

you'll know exactly what Ruby is dealing with, and how she's faking it. She

sounds like a very special little lady and I'm guessing she's developed some

great coping skills! But that doesn't mean she doesn't need some supports. And

in order to get those supports, you have to document the need. An assessment

will do that.

Best -- Jill

[Guest guest]

In a message dated 9/20/2006 9:20:51 A.M. Eastern Standard Time,

elbert@... writes:

We have a meeting this

Friday to discuss Ruby's IEP with the school. Despite her paralysis

and other issues, I suspect they are going to want to give her a 504

Plan rather than an IEP and I am, honestly, not sure what I want from

them. The physical therapists they have provided to date have not

inspired much confidence, so that might not be worth pursuing. But

Ruby still tires very easily and needs extra time and accommodation

to get places and be involved in things. She is clearly not to the

point of needing an FM system, but should we be demanding seating

near the teacher and anything else like that?

A 504 plan may be just what Ruby should have. An IEP is for a child who has

learning disabilities, and while hearing loss is a disability, it isn't always

a " learning " one. It is because of her paralysis and other issues (not

despite them) that they are considering the 504 classification. That is the

type

of thing a 504 was initially designed to address.

You should probably be requesting a variety of things, but I would start

with asking for a full assessment by a TOD or D/HOH facility that knows about

hearing loss in children. Our kids are masters at developing coping skills that

can take them pretty far. But when they start to fail, they fail quickly.

And as long as our kids not failing, the schools are not going to step in and

try to figure out what they need. There are just too many kids with needs and

the ones who obviously need help are going to be the ones who get it first.

Our son Ian is bright, but no genius -- don't get me wrong, the mom in me

thinks the sun rises and sets on the boy, but the truth is he is a strong but

somewhat average student. And for a kid with a hearing loss, that can be an

amazing feat. (When I consider the issues that Ian deals with daily, being a

high 80s to low 90s student is quite an accomplishment!) But my point in

bringing up his academic abilities is because Ian is one of the kids who was

falling through the cracks.

Not quite a bad enough student to warrant attention or intervention, but

enough struggling that by the end of 2nd grade it was suggested we retain him.

I had to fight to get him tested so we could figure out if there was a

processing speed problem (there was) and once his issues were identified, fight

to

get him classified. Not because they don't classify kids, but because he was

very borderline and they wanted to retain and/or offer readi-made solutions

before hiring D/HOH services, which are more expensive.

My point here is that it's not easy to determine what these kids are

missing. We know them better than the schools and we parents aren't qualified.

We

see something is missing, but often can't pout our finger on it.

So I would request an assessment be done by D/HOH professionals. That way

you'll know exactly what Ruby is dealing with, and how she's faking it. She

sounds like a very special little lady and I'm guessing she's developed some

great coping skills! But that doesn't mean she doesn't need some supports. And

in order to get those supports, you have to document the need. An assessment

will do that.

Best -- Jill

[Guest guest]

In a message dated 9/20/2006 9:20:51 A.M. Eastern Standard Time,

elbert@... writes:

We have a meeting this

Friday to discuss Ruby's IEP with the school. Despite her paralysis

and other issues, I suspect they are going to want to give her a 504

Plan rather than an IEP and I am, honestly, not sure what I want from

them. The physical therapists they have provided to date have not

inspired much confidence, so that might not be worth pursuing. But

Ruby still tires very easily and needs extra time and accommodation

to get places and be involved in things. She is clearly not to the

point of needing an FM system, but should we be demanding seating

near the teacher and anything else like that?

A 504 plan may be just what Ruby should have. An IEP is for a child who has

learning disabilities, and while hearing loss is a disability, it isn't always

a " learning " one. It is because of her paralysis and other issues (not

despite them) that they are considering the 504 classification. That is the

type

of thing a 504 was initially designed to address.

You should probably be requesting a variety of things, but I would start

with asking for a full assessment by a TOD or D/HOH facility that knows about

hearing loss in children. Our kids are masters at developing coping skills that

can take them pretty far. But when they start to fail, they fail quickly.

And as long as our kids not failing, the schools are not going to step in and

try to figure out what they need. There are just too many kids with needs and

the ones who obviously need help are going to be the ones who get it first.

Our son Ian is bright, but no genius -- don't get me wrong, the mom in me

thinks the sun rises and sets on the boy, but the truth is he is a strong but

somewhat average student. And for a kid with a hearing loss, that can be an

amazing feat. (When I consider the issues that Ian deals with daily, being a

high 80s to low 90s student is quite an accomplishment!) But my point in

bringing up his academic abilities is because Ian is one of the kids who was

falling through the cracks.

Not quite a bad enough student to warrant attention or intervention, but

enough struggling that by the end of 2nd grade it was suggested we retain him.

I had to fight to get him tested so we could figure out if there was a

processing speed problem (there was) and once his issues were identified, fight

to

get him classified. Not because they don't classify kids, but because he was

very borderline and they wanted to retain and/or offer readi-made solutions

before hiring D/HOH services, which are more expensive.

My point here is that it's not easy to determine what these kids are

missing. We know them better than the schools and we parents aren't qualified.

We

see something is missing, but often can't pout our finger on it.

So I would request an assessment be done by D/HOH professionals. That way

you'll know exactly what Ruby is dealing with, and how she's faking it. She

sounds like a very special little lady and I'm guessing she's developed some

great coping skills! But that doesn't mean she doesn't need some supports. And

in order to get those supports, you have to document the need. An assessment

will do that.

Best -- Jill

[Guest guest]

Hi Bonnie-

Thanks for the reply and hello. In answer to your questions: Yes, I

did find this list through you note on the ACOR Neuroblastoma list.

Thanks. I have been reading this one a bit, but have been so busy and

it is all such a new " language " to me, that I haven't been able to

absorb it. But now I think it is time I get going up the learning

curve about this hearing loss stuff!

And, yes, Ruby has had a full neuropysch work-up. She did the tandem

(two) transplant protocol at CHOP and they do a full eval before the

first transplant. Actually, Ruby's was done while she was getting

pre-medicated and starting the conditioning chemo on day -5 of that

first transplant... I was amazed she could deal with it since it was

about three hours of testing and she is very shy, but the neuropsych

fellow who did it was terrific. So we know she tests as very smart

and in may ways could place into about third grade, but she obviously

is way behind in gross motor (since she has lower limb paralysis) and

even showed some odd results for hand/fine motor which can't be

explained by her spinal cord injury, so we are watching that carefully.

You also asked about staging of the neuroblastoma. Complicated

question in Ruby's case. First diagnosis came with rapid onset

paralysis and emergency spinal cord decompression surgery when she was

two days shy of four months old. Depending on hwo you read the

radiology, she could have been Stage 2A or 2B. Most prognostic

markers suggested she was low risk (young age, NMYC not ampkified,

favorable Shimada histology). Only really " bad " marker was ploidy.

She was treated here in Baltimore at the University of MD Hospital at

the time. It is a long story, but it turns out that the general

surgeon and the radiology team both missed extensive tumor (that I

found looking at her films by my kitchen light!). Not good. The

residual tumor then began to progress, so we went to Sloan and CHOP

for opinions. Opinions were similar. Basically do four rounds of

chemo or watch it a little longer to see if it matures or regresses.

We ended up sticking with the CHOP team and got ready for chemo. Then

the tumor stopped growing, so we waited. Then it started again and we

scheduled port placement and chemo. Then it stopped again. Then we

got two years without growth and Maris declared that Ruby had met

the challenges of the cancer and it was now benign. But within about

four months, she presented with pain and we found that she had new

masses and extensive metastatic disease (skull, bones everywhere,

marrow greater than 99% filled, lymph system...). The new masses were

creating pressure between here heart and spine.

So she was rediagnosed at that time as Stage 4 and the question became

was this a whole new case of neuroblastoma or was she a very late

progression of a low stage case. No way to tell. Both extremely rare

(about 7 cases like her in the thousands of COG kids experiences).

The fact that my mother had a spinal tumor as a teenager made

Maris initially tilt towards Ruby maybe being genetically predisposed

and this being a wholw new, second case. But he seems to have backed

off that and really no one knows and there is no way to know. Her

blood and tumor material is in the lab, but no one knows what to look for.

Phew... now I am far afield. Anyway, you are right, obviously, she is

at risk for the many things kids who have chemo and radiation always

face. Since the tandem protocol includes total body irradiation

(including head), growth and cognitive effects are up near the top of

the list. But we felt we had no choice, so we just keep marching. The

fact that she had lots of nerve problems from the initial paralysis

coupled with the skull involvement to argue against trying an antibody

approach at Sloan (which is way to complicated to explain here), so we

ended up with transplants. At the time we opted in, the data from the

randomized trials were also quite clear to make it the best option,

although the more recent data are less clear and, obviously, as more

data come in it may prove to not be the best choice... but that is why

you have to do the studies afterall.

And I do have Shirley's letter. She very kindly sent it to many of

us, I think. It was really helpful for me to read.

So thanks for the info on Elias. In some ways, what I get from that

is that it is good to do things like FM systems at as young an age as

possible. Just makes them more " natural " to the kids. As if they are

more willing to accept interventions when they are still too young to

be too self conscious about them or something.

Oops... gotta run. Work awaits. But thanks again for getting me to

this list and for the info!

Give Elias a hug for me. I am very fond of neuroblastoma kids!

Best-

[Guest guest]

Hi -

Thanks for the reply. I can tell right away that I have to go learn a

few things and clarify. I have the audiology report in front of me,

but I have to figure out how to better describe the hearing loss to you.

Here's what I see:

1. Otoacoustic Emissions (OAE) testing shows that the emissions are

completely absent above 5KHz and present below 4 KHz, with inbetween

frequencies apparently less clear. Loss is bilateral (not surprising

since it is from chemo and radiation and not something anatomical or

give to just one ear).

2. Audiometric test results show normal sensitivity to pure tones up

to 4KHz and then a steep drop for the rest of the high frequency range

(tested up to 8KHz). It is on a plot which seems to show the normal

sensitivity range shaded in gray as being as low as 15 dB below a zero

line. Where Ruby drops below that shaded area, she goes as low as

55-60 dB. I obviously need to get a little educated on how to read an

audiogram! But if I read it right, I guess I can tell you that her

loss is only above 4KHz as of the test date and it gets " bad " , but

maybe not what would be called " profound " ? I, obviously, also need to

learn the lingo a bit and figure out what " profound " means in this

setting!

Your thoughts on FM and soundfield are very interesting. Her

kindergarten setting makes it hard for me to see how to get an FM

system to fit in. They aren't sitting in regular places very much of

the time. And she doesn't wear hearing aids, so I also don't know how

she would easily wear a receiver. And I have no idea what a

soundfield is! So I am off to google it! There is no school

audiologist, so I am also going to have to look into that.

Thanks again. You have given me much to think about already.

Best,

>

> Hi - Wow, your Ruby sounds like a true gem and she sounds

lucky to have the parents that she does. I'm kind of confused by your

description of her loss. Is the loss profound (100 db+) above 4-5K or

is the only place there is loss from 4-5K and up? What is the cause

of all the noise in her classroom? Is it kid noise? Noisy bad

acoustics type of a room? Is the class out of control or noisy

behavior wise? The fact that Ruby is asking other kids questions

about directions lets you know she is having some serious trouble

hearing in this classroom. An FM or perhaps even a soundfield might

be something to consider. Sometimes, usually depending on the

teacher, a soundfield can quiet down a class, but with the wrong

teacher, the kids just get louder so the soundfield just adds to the

cacophony. Perhaps an personal FM with low or no gain would benefit

her. They are used for kids without hearing loss too, kids with

auditory processing issues etc. Even kids with unilateral and

" minimal " (16-25 dB) losses have nearly a 50% chance of having to

repeat a grade, so the cumulative effects of not hearing what is

going on can be huge. Kids ability to understand speech in noise is

also very variable. My daughter comprehends nearly 100% in a quiet

environment but only comprehends 40% in noise. Most of the

grammatical information in English like tense, plurality and

possession happen using the very quietest and highest frequency sounds

like s and t. So if the hearing loss is affecting her ability to hear

ONLY these letters, it will still affect her quite a bit. And the

noise in the classroom will drown out these sounds first as well. Do

you have a good pediatric or school audiologist who could do some

functional testing of Ruby in and out of noise? in GA

>

[Guest guest]

In a message dated 9/21/2006 10:15:06 A.M. Eastern Standard Time,

tracey@... writes:

The best

advice I can give you is to make sure that you have a TOD or an

educational audiologist consulting with the school to make sure the

504 plan is appropriate. Request a functional hearing test in the

classroom.

I agree about getting the assessment and having a TOD involved.

I just want to add that our kids can be classified under both IDEA and 504

at the same time. It is not terribly common, but it is done. So, this doesn't

have to be an " either/or " situation. Each classification can address specific

needs and work together to support the child.

Perhaps Ruby is one of those kids who does need dual support plans. But

again, there needs to be some diagnostic testing to determine that. I

personally

like outside assessments because I had to fight my district for everything

and don't really trust their choice of professionals.

Best -- Jill

[Guest guest]

In a message dated 9/21/2006 10:15:06 A.M. Eastern Standard Time,

tracey@... writes:

The best

advice I can give you is to make sure that you have a TOD or an

educational audiologist consulting with the school to make sure the

504 plan is appropriate. Request a functional hearing test in the

classroom.

I agree about getting the assessment and having a TOD involved.

I just want to add that our kids can be classified under both IDEA and 504

at the same time. It is not terribly common, but it is done. So, this doesn't

have to be an " either/or " situation. Each classification can address specific

needs and work together to support the child.

Perhaps Ruby is one of those kids who does need dual support plans. But

again, there needs to be some diagnostic testing to determine that. I

personally

like outside assessments because I had to fight my district for everything

and don't really trust their choice of professionals.

Best -- Jill

[Guest guest]

In a message dated 9/21/2006 10:15:06 A.M. Eastern Standard Time,

tracey@... writes:

The best

advice I can give you is to make sure that you have a TOD or an

educational audiologist consulting with the school to make sure the

504 plan is appropriate. Request a functional hearing test in the

classroom.

I agree about getting the assessment and having a TOD involved.

I just want to add that our kids can be classified under both IDEA and 504

at the same time. It is not terribly common, but it is done. So, this doesn't

have to be an " either/or " situation. Each classification can address specific

needs and work together to support the child.

Perhaps Ruby is one of those kids who does need dual support plans. But

again, there needs to be some diagnostic testing to determine that. I

personally

like outside assessments because I had to fight my district for everything

and don't really trust their choice of professionals.

Best -- Jill

[Guest guest]

You don't need a regular place to use an FM system! The way that Elias's

works is

this : he has tiny " boots " that hook into his hearing aids. His teacher

wears

a small unit with a mike which picks up her voice and transmits it to the

hearing aids.

During story time, or music time, or whenever her voice needs to be heard

loud and clear above the din, that is when it is useful. I use it in the car

too,

so we can talk easily above the noise of the engine and the iPod (my older

kid has to listen to the Monkees every day). Sometimes, I wish I had an

FM system too!

I'll post more on the neuroblastoma stuff and hearing in a minute, but I

just

wanted you to know how easily an FM system can integrate into a

less-than-structured classroom.

Bonnie

>

>

> Your thoughts on FM and soundfield are very interesting. Her

> kindergarten setting makes it hard for me to see how to get an FM

> system to fit in. They aren't sitting in regular places very much of

> the time. And she doesn't wear hearing aids, so I also don't know how

> she would easily wear a receiver. And I have no idea what a

> soundfield is! So I am off to google it! There is no school

> audiologist, so I am also going to have to look into that.

>

> Thanks again. You have given me much to think about already.

>

> Best,

>

>

>

[Guest guest]

Hi ,

Well you have clearly demonstrated to all of us that not all

husbands/Dads are emotionally removed and uninvolved in their

children's health/education decisions. Your love and devotion to

your daughter and your ability to express it are admirable. She is

a lucky little girl.

Regarding the hearing loss and the affect in the classroom. I have

one of those kids that fell through the cracks. He was not fitted

for hearing aids because of the configuration of his loss. The

school fought our audiologist recommendation for an FM system, as

they felt his loss did not have educational significance. Of course

the people making these decisions at school know NOTHING about

hearing loss and how it affects kids in the classroom. The best

advice I can give you is to make sure that you have a TOD or an

educational audiologist consulting with the school to make sure the

504 plan is appropriate. Request a functional hearing test in the

classroom.

My son is now 10. He was diagnose at age 4. We finally have

someone consulting with the school and only now are the correct

assessments being done and the proper accommodations being

provided. As a result, my son has some big swiss cheese holes in

his language/processing skills. I suspect he may be going to an IEP

from the 504 when we meet next week. Probably never would have

happened if we would have done things right from Kindergarten.

Good Luck!

Tracey

[Guest guest]

Hi ,

I know how you feel about learning the lingo. I still don't know if I am

always using the correct terminology. I just wanted to give you some info

that I have on the back of my daughter 's audiograms. The chart is a

classification of hearing loss and states:

0-25dB Normal Limits

26-40dB Mild Hearing Loss

41-55dB Moderate Hearing Loss

56-70dB Moderately Severe Hearing Loss

71-90dB Severe Hearing Loss

91dB + Profound Hearing Loss

I am new to this group as well and have been reading all of the very

informative emails that have been coming through. I am really glad I joined

this group!

Centreville, MD

>

>Reply-To: Listen-Up

>To: Listen-Up

>Subject: Re: Introduction: Ruby's father

>Date: Thu, 21 Sep 2006 13:36:06 -0000

>

>Hi -

>

>Thanks for the reply. I can tell right away that I have to go learn a

>few things and clarify. I have the audiology report in front of me,

>but I have to figure out how to better describe the hearing loss to you.

>

>Here's what I see:

>

>1. Otoacoustic Emissions (OAE) testing shows that the emissions are

>completely absent above 5KHz and present below 4 KHz, with inbetween

>frequencies apparently less clear. Loss is bilateral (not surprising

>since it is from chemo and radiation and not something anatomical or

>give to just one ear).

>

>2. Audiometric test results show normal sensitivity to pure tones up

>to 4KHz and then a steep drop for the rest of the high frequency range

>(tested up to 8KHz). It is on a plot which seems to show the normal

>sensitivity range shaded in gray as being as low as 15 dB below a zero

>line. Where Ruby drops below that shaded area, she goes as low as

>55-60 dB. I obviously need to get a little educated on how to read an

>audiogram! But if I read it right, I guess I can tell you that her

>loss is only above 4KHz as of the test date and it gets " bad " , but

>maybe not what would be called " profound " ? I, obviously, also need to

>learn the lingo a bit and figure out what " profound " means in this

>setting!

>

>Your thoughts on FM and soundfield are very interesting. Her

>kindergarten setting makes it hard for me to see how to get an FM

>system to fit in. They aren't sitting in regular places very much of

>the time. And she doesn't wear hearing aids, so I also don't know how

>she would easily wear a receiver. And I have no idea what a

>soundfield is! So I am off to google it! There is no school

>audiologist, so I am also going to have to look into that.

>

>Thanks again. You have given me much to think about already.

>

>Best,

>

>

>

>

> >

> > Hi - Wow, your Ruby sounds like a true gem and she sounds

>lucky to have the parents that she does. I'm kind of confused by your

>description of her loss. Is the loss profound (100 db+) above 4-5K or

>is the only place there is loss from 4-5K and up? What is the cause

>of all the noise in her classroom? Is it kid noise? Noisy bad

>acoustics type of a room? Is the class out of control or noisy

>behavior wise? The fact that Ruby is asking other kids questions

>about directions lets you know she is having some serious trouble

>hearing in this classroom. An FM or perhaps even a soundfield might

>be something to consider. Sometimes, usually depending on the

>teacher, a soundfield can quiet down a class, but with the wrong

>teacher, the kids just get louder so the soundfield just adds to the

>cacophony. Perhaps an personal FM with low or no gain would benefit

>her. They are used for kids without hearing loss too, kids with

>auditory processing issues etc. Even kids with unilateral and

> " minimal " (16-25 dB) losses have nearly a 50% chance of having to

>repeat a grade, so the cumulative effects of not hearing what is

>going on can be huge. Kids ability to understand speech in noise is

>also very variable. My daughter comprehends nearly 100% in a quiet

>environment but only comprehends 40% in noise. Most of the

>grammatical information in English like tense, plurality and

>possession happen using the very quietest and highest frequency sounds

>like s and t. So if the hearing loss is affecting her ability to hear

>ONLY these letters, it will still affect her quite a bit. And the

>noise in the classroom will drown out these sounds first as well. Do

>you have a good pediatric or school audiologist who could do some

>functional testing of Ruby in and out of noise? in GA

> >

>

>

>

>

_________________________________________________________________

Find a local pizza place, music store, museum and more…then map the best

route! http://local.live.com

[Guest guest]

Hi ,

I know how you feel about learning the lingo. I still don't know if I am

always using the correct terminology. I just wanted to give you some info

that I have on the back of my daughter 's audiograms. The chart is a

classification of hearing loss and states:

0-25dB Normal Limits

26-40dB Mild Hearing Loss

41-55dB Moderate Hearing Loss

56-70dB Moderately Severe Hearing Loss

71-90dB Severe Hearing Loss

91dB + Profound Hearing Loss

I am new to this group as well and have been reading all of the very

informative emails that have been coming through. I am really glad I joined

this group!

Centreville, MD

>

>Reply-To: Listen-Up

>To: Listen-Up

>Subject: Re: Introduction: Ruby's father

>Date: Thu, 21 Sep 2006 13:36:06 -0000

>

>Hi -

>

>Thanks for the reply. I can tell right away that I have to go learn a

>few things and clarify. I have the audiology report in front of me,

>but I have to figure out how to better describe the hearing loss to you.

>

>Here's what I see:

>

>1. Otoacoustic Emissions (OAE) testing shows that the emissions are

>completely absent above 5KHz and present below 4 KHz, with inbetween

>frequencies apparently less clear. Loss is bilateral (not surprising

>since it is from chemo and radiation and not something anatomical or

>give to just one ear).

>

>2. Audiometric test results show normal sensitivity to pure tones up

>to 4KHz and then a steep drop for the rest of the high frequency range

>(tested up to 8KHz). It is on a plot which seems to show the normal

>sensitivity range shaded in gray as being as low as 15 dB below a zero

>line. Where Ruby drops below that shaded area, she goes as low as

>55-60 dB. I obviously need to get a little educated on how to read an

>audiogram! But if I read it right, I guess I can tell you that her

>loss is only above 4KHz as of the test date and it gets " bad " , but

>maybe not what would be called " profound " ? I, obviously, also need to

>learn the lingo a bit and figure out what " profound " means in this

>setting!

>

>Your thoughts on FM and soundfield are very interesting. Her

>kindergarten setting makes it hard for me to see how to get an FM

>system to fit in. They aren't sitting in regular places very much of

>the time. And she doesn't wear hearing aids, so I also don't know how

>she would easily wear a receiver. And I have no idea what a

>soundfield is! So I am off to google it! There is no school

>audiologist, so I am also going to have to look into that.

>

>Thanks again. You have given me much to think about already.

>

>Best,

>

>

>

>

> >

> > Hi - Wow, your Ruby sounds like a true gem and she sounds

>lucky to have the parents that she does. I'm kind of confused by your

>description of her loss. Is the loss profound (100 db+) above 4-5K or

>is the only place there is loss from 4-5K and up? What is the cause

>of all the noise in her classroom? Is it kid noise? Noisy bad

>acoustics type of a room? Is the class out of control or noisy

>behavior wise? The fact that Ruby is asking other kids questions

>about directions lets you know she is having some serious trouble

>hearing in this classroom. An FM or perhaps even a soundfield might

>be something to consider. Sometimes, usually depending on the

>teacher, a soundfield can quiet down a class, but with the wrong

>teacher, the kids just get louder so the soundfield just adds to the

>cacophony. Perhaps an personal FM with low or no gain would benefit

>her. They are used for kids without hearing loss too, kids with

>auditory processing issues etc. Even kids with unilateral and

> " minimal " (16-25 dB) losses have nearly a 50% chance of having to

>repeat a grade, so the cumulative effects of not hearing what is

>going on can be huge. Kids ability to understand speech in noise is

>also very variable. My daughter comprehends nearly 100% in a quiet

>environment but only comprehends 40% in noise. Most of the

>grammatical information in English like tense, plurality and

>possession happen using the very quietest and highest frequency sounds

>like s and t. So if the hearing loss is affecting her ability to hear

>ONLY these letters, it will still affect her quite a bit. And the

>noise in the classroom will drown out these sounds first as well. Do

>you have a good pediatric or school audiologist who could do some

>functional testing of Ruby in and out of noise? in GA

> >

>

>

>

>

_________________________________________________________________

Find a local pizza place, music store, museum and more…then map the best

route! http://local.live.com

[Guest guest]

Hi ,

I know how you feel about learning the lingo. I still don't know if I am

always using the correct terminology. I just wanted to give you some info

that I have on the back of my daughter 's audiograms. The chart is a

classification of hearing loss and states:

0-25dB Normal Limits

26-40dB Mild Hearing Loss

41-55dB Moderate Hearing Loss

56-70dB Moderately Severe Hearing Loss

71-90dB Severe Hearing Loss

91dB + Profound Hearing Loss

I am new to this group as well and have been reading all of the very

informative emails that have been coming through. I am really glad I joined

this group!

Centreville, MD

>

>Reply-To: Listen-Up

>To: Listen-Up

>Subject: Re: Introduction: Ruby's father

>Date: Thu, 21 Sep 2006 13:36:06 -0000

>

>Hi -

>

>Thanks for the reply. I can tell right away that I have to go learn a

>few things and clarify. I have the audiology report in front of me,

>but I have to figure out how to better describe the hearing loss to you.

>

>Here's what I see:

>

>1. Otoacoustic Emissions (OAE) testing shows that the emissions are

>completely absent above 5KHz and present below 4 KHz, with inbetween

>frequencies apparently less clear. Loss is bilateral (not surprising

>since it is from chemo and radiation and not something anatomical or

>give to just one ear).

>

>2. Audiometric test results show normal sensitivity to pure tones up

>to 4KHz and then a steep drop for the rest of the high frequency range

>(tested up to 8KHz). It is on a plot which seems to show the normal

>sensitivity range shaded in gray as being as low as 15 dB below a zero

>line. Where Ruby drops below that shaded area, she goes as low as

>55-60 dB. I obviously need to get a little educated on how to read an

>audiogram! But if I read it right, I guess I can tell you that her

>loss is only above 4KHz as of the test date and it gets " bad " , but

>maybe not what would be called " profound " ? I, obviously, also need to

>learn the lingo a bit and figure out what " profound " means in this

>setting!

>

>Your thoughts on FM and soundfield are very interesting. Her

>kindergarten setting makes it hard for me to see how to get an FM

>system to fit in. They aren't sitting in regular places very much of

>the time. And she doesn't wear hearing aids, so I also don't know how

>she would easily wear a receiver. And I have no idea what a

>soundfield is! So I am off to google it! There is no school

>audiologist, so I am also going to have to look into that.

>

>Thanks again. You have given me much to think about already.

>

>Best,

>

>

>

>

> >

> > Hi - Wow, your Ruby sounds like a true gem and she sounds

>lucky to have the parents that she does. I'm kind of confused by your

>description of her loss. Is the loss profound (100 db+) above 4-5K or

>is the only place there is loss from 4-5K and up? What is the cause

>of all the noise in her classroom? Is it kid noise? Noisy bad

>acoustics type of a room? Is the class out of control or noisy

>behavior wise? The fact that Ruby is asking other kids questions

>about directions lets you know she is having some serious trouble

>hearing in this classroom. An FM or perhaps even a soundfield might

>be something to consider. Sometimes, usually depending on the

>teacher, a soundfield can quiet down a class, but with the wrong

>teacher, the kids just get louder so the soundfield just adds to the

>cacophony. Perhaps an personal FM with low or no gain would benefit

>her. They are used for kids without hearing loss too, kids with

>auditory processing issues etc. Even kids with unilateral and

> " minimal " (16-25 dB) losses have nearly a 50% chance of having to

>repeat a grade, so the cumulative effects of not hearing what is

>going on can be huge. Kids ability to understand speech in noise is

>also very variable. My daughter comprehends nearly 100% in a quiet

>environment but only comprehends 40% in noise. Most of the

>grammatical information in English like tense, plurality and

>possession happen using the very quietest and highest frequency sounds

>like s and t. So if the hearing loss is affecting her ability to hear

>ONLY these letters, it will still affect her quite a bit. And the

>noise in the classroom will drown out these sounds first as well. Do

>you have a good pediatric or school audiologist who could do some

>functional testing of Ruby in and out of noise? in GA

> >

>

>

>

>

_________________________________________________________________

Find a local pizza place, music store, museum and more…then map the best

route! http://local.live.com

[Guest guest]

, just read your post to Bonnie, you and Ruby have sure been through a lot

- most of us can't even imagine I'm sure. Here's some links to things to help

you understand the audiogram.

www.michdhh.org Put " ross " in the search space and go to the RRRRRR entry. It's

a great explanation by Mark Ross who is a HOH professor.

http://www.capitolent.net/berlin.htm Another explanation with a little

different twist by Berlin, an eminent audiologist.

Here's something from Carol Flexer (professor of audiology)on minimal loss - but

it has great applicability to a child with any level of loss in a classroom.

Anything by Carol Flexer is great, she is an audiologist that writes a lot

about little kids and hearing and also kids in school with hearing loss. She

has written several great books, one is " Facilitating Hearing and Listening in

young Children " . The following articles will give you a little taste of her

expertise.

http://www.totalhearing.net/child_faq_management.htm

www.lightspeed-tek.com/files%5CFlexer_Interview_1_16_06.pdf

After reading through these you may wonder about the possibility of getting aids

for Ruby. There is a new type of aid on the market that is made for this type of

loss. They are called " open fitting " and are just for high frequency losses. I

know there is one little guy on the list who has them. Also remember that you

should be able to get the aids on a trial basis - usually 30 or 60 days. Is

your current audiologist a pediatric audiologist? They also make FM's that are

for kids without hearing aids, they use headphones or an ear piece like an ear

mold. I think Phonak's is called " edulink "

http://www.phonak.com/professional/productsp/fm/edulink_p.htm Happy hunting.

[Guest guest]

, just read your post to Bonnie, you and Ruby have sure been through a lot

- most of us can't even imagine I'm sure. Here's some links to things to help

you understand the audiogram.

www.michdhh.org Put " ross " in the search space and go to the RRRRRR entry. It's

a great explanation by Mark Ross who is a HOH professor.

http://www.capitolent.net/berlin.htm Another explanation with a little

different twist by Berlin, an eminent audiologist.

Here's something from Carol Flexer (professor of audiology)on minimal loss - but

it has great applicability to a child with any level of loss in a classroom.

Anything by Carol Flexer is great, she is an audiologist that writes a lot

about little kids and hearing and also kids in school with hearing loss. She

has written several great books, one is " Facilitating Hearing and Listening in

young Children " . The following articles will give you a little taste of her

expertise.

http://www.totalhearing.net/child_faq_management.htm

www.lightspeed-tek.com/files%5CFlexer_Interview_1_16_06.pdf

After reading through these you may wonder about the possibility of getting aids

for Ruby. There is a new type of aid on the market that is made for this type of

loss. They are called " open fitting " and are just for high frequency losses. I

know there is one little guy on the list who has them. Also remember that you

should be able to get the aids on a trial basis - usually 30 or 60 days. Is

your current audiologist a pediatric audiologist? They also make FM's that are

for kids without hearing aids, they use headphones or an ear piece like an ear

mold. I think Phonak's is called " edulink "

http://www.phonak.com/professional/productsp/fm/edulink_p.htm Happy hunting.

[Guest guest]

, just read your post to Bonnie, you and Ruby have sure been through a lot

- most of us can't even imagine I'm sure. Here's some links to things to help

you understand the audiogram.

www.michdhh.org Put " ross " in the search space and go to the RRRRRR entry. It's

a great explanation by Mark Ross who is a HOH professor.

http://www.capitolent.net/berlin.htm Another explanation with a little

different twist by Berlin, an eminent audiologist.

Here's something from Carol Flexer (professor of audiology)on minimal loss - but

it has great applicability to a child with any level of loss in a classroom.

Anything by Carol Flexer is great, she is an audiologist that writes a lot

about little kids and hearing and also kids in school with hearing loss. She

has written several great books, one is " Facilitating Hearing and Listening in

young Children " . The following articles will give you a little taste of her

expertise.

http://www.totalhearing.net/child_faq_management.htm

www.lightspeed-tek.com/files%5CFlexer_Interview_1_16_06.pdf

After reading through these you may wonder about the possibility of getting aids

for Ruby. There is a new type of aid on the market that is made for this type of

loss. They are called " open fitting " and are just for high frequency losses. I

know there is one little guy on the list who has them. Also remember that you

should be able to get the aids on a trial basis - usually 30 or 60 days. Is

your current audiologist a pediatric audiologist? They also make FM's that are

for kids without hearing aids, they use headphones or an ear piece like an ear

mold. I think Phonak's is called " edulink "

http://www.phonak.com/professional/productsp/fm/edulink_p.htm Happy hunting.

[Guest guest]

, one little twist on the audiogram - 25dB as normal is for adults, for

kids the cut off is 15 dB and 16-25 dB is considered " minimal " hearing loss.

Re: Introduction: Ruby's father

>>Date: Thu, 21 Sep 2006 13:36:06 -0000

>>

>>Hi -

>>

>>Thanks for the reply. I can tell right away that I have to go learn a

>>few things and clarify. I have the audiology report in front of me,

>>but I have to figure out how to better describe the hearing loss to you.

>>

>>Here's what I see:

>>

>>1. Otoacoustic Emissions (OAE) testing shows that the emissions are

>>completely absent above 5KHz and present below 4 KHz, with inbetween

>>frequencies apparently less clear. Loss is bilateral (not surprising

>>since it is from chemo and radiation and not something anatomical or

>>give to just one ear).

>>

>>2. Audiometric test results show normal sensitivity to pure tones up

>>to 4KHz and then a steep drop for the rest of the high frequency range

>>(tested up to 8KHz). It is on a plot which seems to show the normal

>>sensitivity range shaded in gray as being as low as 15 dB below a zero

>>line. Where Ruby drops below that shaded area, she goes as low as

>>55-60 dB. I obviously need to get a little educated on how to read an

>>audiogram! But if I read it right, I guess I can tell you that her

>>loss is only above 4KHz as of the test date and it gets " bad " , but

>>maybe not what would be called " profound " ? I, obviously, also need to

>>learn the lingo a bit and figure out what " profound " means in this

>>setting!

>>

>>Your thoughts on FM and soundfield are very interesting. Her

>>kindergarten setting makes it hard for me to see how to get an FM

>>system to fit in. They aren't sitting in regular places very much of

>>the time. And she doesn't wear hearing aids, so I also don't know how

>>she would easily wear a receiver. And I have no idea what a

>>soundfield is! So I am off to google it! There is no school

>>audiologist, so I am also going to have to look into that.

>>

>>Thanks again. You have given me much to think about already.

>>

>>Best,

>>

>>

>>

>>

>> >

>> > Hi - Wow, your Ruby sounds like a true gem and she sounds

>>lucky to have the parents that she does. I'm kind of confused by your

>>description of her loss. Is the loss profound (100 db+) above 4-5K or

>>is the only place there is loss from 4-5K and up? What is the cause

>>of all the noise in her classroom? Is it kid noise? Noisy bad

>>acoustics type of a room? Is the class out of control or noisy

>>behavior wise? The fact that Ruby is asking other kids questions

>>about directions lets you know she is having some serious trouble

>>hearing in this classroom. An FM or perhaps even a soundfield might

>>be something to consider. Sometimes, usually depending on the

>>teacher, a soundfield can quiet down a class, but with the wrong

>>teacher, the kids just get louder so the soundfield just adds to the

>>cacophony. Perhaps an personal FM with low or no gain would benefit

>>her. They are used for kids without hearing loss too, kids with

>>auditory processing issues etc. Even kids with unilateral and

>> " minimal " (16-25 dB) losses have nearly a 50% chance of having to

>>repeat a grade, so the cumulative effects of not hearing what is

>>going on can be huge. Kids ability to understand speech in noise is

>>also very variable. My daughter comprehends nearly 100% in a quiet

>>environment but only comprehends 40% in noise. Most of the

>>grammatical information in English like tense, plurality and

>>possession happen using the very quietest and highest frequency sounds

>>like s and t. So if the hearing loss is affecting her ability to hear

>>ONLY these letters, it will still affect her quite a bit. And the

>>noise in the classroom will drown out these sounds first as well. Do

>>you have a good pediatric or school audiologist who could do some

>>functional testing of Ruby in and out of noise? in GA

>> >

>>

>>

>>

>>

>

>_________________________________________________________________

>Find a local pizza place, music store, museum and more…then map the best

>route! http://local.live.com

>

>

>

>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]

, one little twist on the audiogram - 25dB as normal is for adults, for

kids the cut off is 15 dB and 16-25 dB is considered " minimal " hearing loss.

Re: Introduction: Ruby's father

>>Date: Thu, 21 Sep 2006 13:36:06 -0000

>>

>>Hi -

>>

>>Thanks for the reply. I can tell right away that I have to go learn a

>>few things and clarify. I have the audiology report in front of me,

>>but I have to figure out how to better describe the hearing loss to you.

>>

>>Here's what I see:

>>

>>1. Otoacoustic Emissions (OAE) testing shows that the emissions are

>>completely absent above 5KHz and present below 4 KHz, with inbetween

>>frequencies apparently less clear. Loss is bilateral (not surprising

>>since it is from chemo and radiation and not something anatomical or

>>give to just one ear).

>>

>>2. Audiometric test results show normal sensitivity to pure tones up

>>to 4KHz and then a steep drop for the rest of the high frequency range

>>(tested up to 8KHz). It is on a plot which seems to show the normal

>>sensitivity range shaded in gray as being as low as 15 dB below a zero

>>line. Where Ruby drops below that shaded area, she goes as low as

>>55-60 dB. I obviously need to get a little educated on how to read an

>>audiogram! But if I read it right, I guess I can tell you that her

>>loss is only above 4KHz as of the test date and it gets " bad " , but

>>maybe not what would be called " profound " ? I, obviously, also need to

>>learn the lingo a bit and figure out what " profound " means in this

>>setting!

>>

>>Your thoughts on FM and soundfield are very interesting. Her

>>kindergarten setting makes it hard for me to see how to get an FM

>>system to fit in. They aren't sitting in regular places very much of

>>the time. And she doesn't wear hearing aids, so I also don't know how

>>she would easily wear a receiver. And I have no idea what a

>>soundfield is! So I am off to google it! There is no school

>>audiologist, so I am also going to have to look into that.

>>

>>Thanks again. You have given me much to think about already.

>>

>>Best,

>>

>>

>>

>>

>> >

>> > Hi - Wow, your Ruby sounds like a true gem and she sounds

>>lucky to have the parents that she does. I'm kind of confused by your

>>description of her loss. Is the loss profound (100 db+) above 4-5K or

>>is the only place there is loss from 4-5K and up? What is the cause

>>of all the noise in her classroom? Is it kid noise? Noisy bad

>>acoustics type of a room? Is the class out of control or noisy

>>behavior wise? The fact that Ruby is asking other kids questions

>>about directions lets you know she is having some serious trouble

>>hearing in this classroom. An FM or perhaps even a soundfield might

>>be something to consider. Sometimes, usually depending on the

>>teacher, a soundfield can quiet down a class, but with the wrong

>>teacher, the kids just get louder so the soundfield just adds to the

>>cacophony. Perhaps an personal FM with low or no gain would benefit

>>her. They are used for kids without hearing loss too, kids with

>>auditory processing issues etc. Even kids with unilateral and

>> " minimal " (16-25 dB) losses have nearly a 50% chance of having to

>>repeat a grade, so the cumulative effects of not hearing what is

>>going on can be huge. Kids ability to understand speech in noise is

>>also very variable. My daughter comprehends nearly 100% in a quiet

>>environment but only comprehends 40% in noise. Most of the

>>grammatical information in English like tense, plurality and

>>possession happen using the very quietest and highest frequency sounds

>>like s and t. So if the hearing loss is affecting her ability to hear

>>ONLY these letters, it will still affect her quite a bit. And the

>>noise in the classroom will drown out these sounds first as well. Do

>>you have a good pediatric or school audiologist who could do some

>>functional testing of Ruby in and out of noise? in GA

>> >

>>

>>

>>

>>

>

>_________________________________________________________________

>Find a local pizza place, music store, museum and more…then map the best

>route! http://local.live.com

>

>

>

>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]

, one little twist on the audiogram - 25dB as normal is for adults, for

kids the cut off is 15 dB and 16-25 dB is considered " minimal " hearing loss.

Re: Introduction: Ruby's father

>>Date: Thu, 21 Sep 2006 13:36:06 -0000

>>

>>Hi -

>>

>>Thanks for the reply. I can tell right away that I have to go learn a

>>few things and clarify. I have the audiology report in front of me,

>>but I have to figure out how to better describe the hearing loss to you.

>>

>>Here's what I see:

>>

>>1. Otoacoustic Emissions (OAE) testing shows that the emissions are

>>completely absent above 5KHz and present below 4 KHz, with inbetween

>>frequencies apparently less clear. Loss is bilateral (not surprising

>>since it is from chemo and radiation and not something anatomical or

>>give to just one ear).

>>

>>2. Audiometric test results show normal sensitivity to pure tones up

>>to 4KHz and then a steep drop for the rest of the high frequency range

>>(tested up to 8KHz). It is on a plot which seems to show the normal

>>sensitivity range shaded in gray as being as low as 15 dB below a zero

>>line. Where Ruby drops below that shaded area, she goes as low as

>>55-60 dB. I obviously need to get a little educated on how to read an

>>audiogram! But if I read it right, I guess I can tell you that her

>>loss is only above 4KHz as of the test date and it gets " bad " , but

>>maybe not what would be called " profound " ? I, obviously, also need to

>>learn the lingo a bit and figure out what " profound " means in this

>>setting!

>>

>>Your thoughts on FM and soundfield are very interesting. Her

>>kindergarten setting makes it hard for me to see how to get an FM

>>system to fit in. They aren't sitting in regular places very much of

>>the time. And she doesn't wear hearing aids, so I also don't know how

>>she would easily wear a receiver. And I have no idea what a

>>soundfield is! So I am off to google it! There is no school

>>audiologist, so I am also going to have to look into that.

>>

>>Thanks again. You have given me much to think about already.

>>

>>Best,

>>

>>

>>

>>

>> >

>> > Hi - Wow, your Ruby sounds like a true gem and she sounds

>>lucky to have the parents that she does. I'm kind of confused by your

>>description of her loss. Is the loss profound (100 db+) above 4-5K or

>>is the only place there is loss from 4-5K and up? What is the cause

>>of all the noise in her classroom? Is it kid noise? Noisy bad

>>acoustics type of a room? Is the class out of control or noisy

>>behavior wise? The fact that Ruby is asking other kids questions

>>about directions lets you know she is having some serious trouble

>>hearing in this classroom. An FM or perhaps even a soundfield might

>>be something to consider. Sometimes, usually depending on the

>>teacher, a soundfield can quiet down a class, but with the wrong

>>teacher, the kids just get louder so the soundfield just adds to the

>>cacophony. Perhaps an personal FM with low or no gain would benefit

>>her. They are used for kids without hearing loss too, kids with

>>auditory processing issues etc. Even kids with unilateral and

>> " minimal " (16-25 dB) losses have nearly a 50% chance of having to

>>repeat a grade, so the cumulative effects of not hearing what is

>>going on can be huge. Kids ability to understand speech in noise is

>>also very variable. My daughter comprehends nearly 100% in a quiet

>>environment but only comprehends 40% in noise. Most of the

>>grammatical information in English like tense, plurality and

>>possession happen using the very quietest and highest frequency sounds

>>like s and t. So if the hearing loss is affecting her ability to hear

>>ONLY these letters, it will still affect her quite a bit. And the

>>noise in the classroom will drown out these sounds first as well. Do

>>you have a good pediatric or school audiologist who could do some

>>functional testing of Ruby in and out of noise? in GA

>> >

>>

>>

>>

>>

>

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[Guest guest]

Wow, Ruby's treatment history makes Elias's seem simple by comparison. How

long

ago did she do the tandem transplant? Is she NED at this point? I don't

remember

any of this from the ACOR list, but I have been having trouble getting all

of the posts

from that list. Their software doesn't seem to work well with optimum online

mail - I think

it gets blocked sometimes - so I just switched it to my gmail account a

couple of

days ago.

One thing really leaps out at me : Ruby's neuropsych eval was done before

transplant???

Has she been evaluated since? Because transplant can really change things.

Especially

with the TBI. And if they used carboplatin in the transplant protocol, then

her hearing may

well have changed as well. Sloan actually doesn't send kids for the

neuropsych until

TWO years post chemo, which I think is too late (and I have said this

several times on

the ACOR list). However,

I think some amount of time needs to pass between chemo and the evaluations,

simply

for things to settle down.

As you probably have been told, high dose chemo and any kind of head

radiation, including

TBI, puts a child at high risk for learning disabilities down the road. So

you should consider

getting some kind of educational evaluation done now, assuming some time has

passed

since transplant.

Now, someone on this list (Jill??) suggested an evaluation at a place that

specializes in

hearing impaired kids, and in fact, we are probably going to do just that

for Elias. But

the problem with our neuroblastoma kids is that they are at risk for so much

more than

just the hearing problems. So you need to make sure that the evaluation will

also include

areas besides those impacted by hearing loss. And you guys also have the

additional

puzzle of the mobility impairment. Elias has low muscle tone, and had a lot

of trouble

walking at first. He fatigues easily, even now 2.5 years post chemo, and his

fine motor

skills are very impacted by the low tone. So he qualifies for preschool

special education

services in those areas, because he is so far behind.

Elias was lucky in some ways because he came into the special ed system

through

Early Intervention. He was diagnosed just before he turned 2, and one of his

major symptoms

was that he stopped walking. Sound familiar,huh? I bet that symptom is true

of 75%

of the neuroblastoma kids. But it is usually due to mets or paralysis. At

Sloan, they did an

MRI to look for spinal compression, and of course the MIBG and bone scans.

Well, there

were no mets to the bones, and no spinal compression. So then Dr Kushner was

totally

puzzled as to why he wasn't walking, and orderd physical therapy (they were

worried that

he wouldn't be able to recover from the massive resection surgery since he

was losing

muscle so fast). The Sloan physical therapist in turn referred him to Early

Intervention.

We had to schedule all those EI evaluations during chemo!! What a mess! But

I am so

glad he went into the system, because everything has just flowed along

since. He did a

full set of evaluations in order to go into preschool special ed at age 3,

and Early Intervention

paid for his hearing aids and his FM system.

Well, good luck on everything. BTW, I know there is at least one other

neuroblastoma

family who is lurking on this list as well.

Bonnie

>

> Hi Bonnie-

>

> Thanks for the reply and hello. In answer to your questions: Yes, I

> did find this list through you note on the ACOR Neuroblastoma list.

> Thanks. I have been reading this one a bit, but have been so busy and

> it is all such a new " language " to me, that I haven't been able to

> absorb it. But now I think it is time I get going up the learning

> curve about this hearing loss stuff!

>

>

>