No testing?!

[Guest guest]

Hi Sara,

We went through a few ENT's before finding one that would order tests for

.

The first ENT we saw was right after her official diagnosis. He spent maybe

all of 5 minutes with us. Told us what type of loss she had (we already knew

from the audi), said that she wasd probably born with it, asked if anyone else

in our family had a hearing loss, and told us that she would need aids. That

was it. He was cold and had practically no bedside manner. We found ENT #2.

Much more personable, but this is the one that tried to flush 's ears with

water (simular to a water pick). Bad move for a 2 year old. He had mentioned

about getting some tests done during a early appointment but never mentioned it

again. About six months after we started with him he up and left the clinic

and we had no idea where he had gone. On to ENT#3. By this time I knew that I

wanted some work-ups to look for some causes of her loss. I also knew that I

wanted her to have a CAT scan. He was willing to order the blood work, but told

me that she was too young for a CAT

scan. His words were that she was too young to lay still enough for the test.

She was 4 at the time. He was nice..fairly good with , but it was at this

time I started to hear more about pediatric ENT's and thought that maybe we

should give this a try. So we moved onto our current ENT #4. She is great. At

our first appointment she spoke about all of the testing that we should be

doing. She immediently ordered a CT scan of her temporal lobe. I didn't even

have to ask for it. This is also the ENT that I took to after he had

had many ear infections.

So it's our experience that not all ENT's will order tests in a routine manner

to look for potential causes. When I was trying to justify getting the testing

with the other ENT's I would always say that I needed to know if her loss was

being caused by something that may have implications later on down the line

(Usher's, LVAS, Connexin, etc).

I know that things are still very " confused " down there. I hope that you are

able to see the right people soon.

Debbie, mom to , 6, moderate SNHL and , 3, hearing

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

and ask why not. G.B Shaw

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[Guest guest]

Hi Sara,

NOLA is just short for New Orleans, LA

Did you see someone at LSU before Katrina? I know most of the audi's I

dealt with in the research depts are gone to greener pastures. Dianne

is still in the area, not sure where though. I got an email the other

day telling me where they were seeing patients but can't remember

where. If you like I can ask Dr. Berlin if he knows someone you could

see in the area. We saw Dr. Hebert in Slidell and he sent us to

LSU since my son had these really weird test results which wound up

being auditory neuropathy.

We never had the genetic testing done, just the MRI and basic bloodwork

to see if it was thyroid or kidney related.

Elaine

[Guest guest]

Sara,

My son has had two pediatric ENT's since his HL was diagnosed. Both

were great doctors. (He switched from one to the other because of their

associated audiologists). The first one didn't do much testing, the

second did a lot. I personally don't feel that we gained much from

knowing the results. If it's important to you, by all means find

someone who will do it, but I don't think it's crucial.

Re: Re: No testing?!

[Guest guest]

In a message dated 5/19/2006 6:35:56 P.M. Eastern Daylight Time,

saraandchadd@... writes:

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

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

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

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

So confusing.

This depends on your ENT. Ours is at Columbia Presbyterian and ordered all

sorts of tests -- the majority of them. Ian has what could be markers for a

variety of syndromes and our ENT was , well, shocked that the previous ENT had

not ordered testing to rule them out. A few, like BOR, could have life

threatening elements. So, he warned me that he wanted to test for a few things

in

order to rule them in or out. And because of the different issues being raised

we were also seeing all sorts of specialists as the need arose. It was a

very fast paced 2 years. .

It is all confusing. If you trust your ENT and are comfortable, then I would

follow his/her lead on the testing. As issues arise, if they arise, you can

then see the specialist who can address that specific concern. I would NOT

try to get my kid tested for everything under the sun just because there's an

outside chance something might exist.

Ian had all that testing because the concerns were very valid. The testing

process was exhausting for him and I had the added unpleasant task of trying to

decide if the doctors we saw were interested in helping my son, or were

looking for the topic of the next paper. There were a few who I basically

walked

out on because, to them, Ian was a great paper topic, a human lab rat, not a

little boy who needed help. I hated that.

So, I'd go slowly and see whoever is needed. Not try and get a ton of

testing done just to gather information. There has to be a plan and a reason or

the

information is just a collection of meaningless data. (We had plenty of

that.)

Jill

[Guest guest]

elaine_blackford beat4girl@...> wrote: Hi Sara,

NOLA is just short for New Orleans, LA

--------I know that!LOL! I just had a momentary brain lapse and thought you

were refering to something else.

Did you see someone at LSU before Katrina?

---------No - I wan't happy with what they suggested I had to do. They

weren't exactly located in a " good " part of town and I do NOT drive by myself

down there - especially if I will have to walk from a parking lot. Call me

overprotective.

I got an email the other day telling me where they were seeing patients but

can't remember where. If you like I can ask Dr. Berlin if he knows someone you

could see in the area.

------My audi handles everything. One reason why I love her so much. At least

I don't have to spend the hours on the phone just trying to locate people.

Supposidely LSU is seeing people in Baton Rouge but that not all of their

pediatric audi people are up and running. That is why they said they will see

me but not until the fall. They are returning this summer but I guess they are

expecting it to take a while to get things up and running. My audi contacted a

Dr. Robin H? or maybe T? that she said was from LSUMC although I may have heard

wrong. He is now in Canada with his sick mother so I don't know if he intends

on returning or not. He is the one that said we should consider their loss

progressive and that one year was not enough time to determine it for sure. My

audi was suppose to contact another ENT for me (she likes to give them the

medical jargon background I suppose) and was supposet o call me yesterday but I

didn't hear from her. We might know more Monday. My

audi was pretty frustrated with my ENT also. I told her that he said testing

is pointless because you can't do anything about it and she said " yeah but you

want to KNOW! "

We never had the genetic testing done, just the MRI and basic bloodwork

to see if it was thyroid or kidney related.

-------------The genetic testing is the most important to me just because of

our Cajun heritage. Although it is highly unlikely that they have Ushers (that

is Ushers right?) I want to rule it out. Along with other things. Since my son

was also born with malrotation I want to make sure that there isn't anything

else going on with him - although in the hospital he did see a cardiologist,

neurologist, and others to rule out seizures and stuff when they were still

trying to diagnose the malrotation. I wonder if they would do any different

testing now that they know he is HOH too?

Wow that was an earful - sorry.

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[Guest guest]

I would hypothesize that larger ENT clinics with otology fellowship programs

or ENT clinics associated would universities are more likely to have the

recent training to know the latest on what's available with respect to

genetic testing. At our clinic, you pretty much have to request NOT to have

genetic testing as our fellows are all working on a hearing impairment

genetic marker study with some Drs at Stanford and they are always looking

for new subjects :-)

BTW, there is a great new head only CT system out there called Xoran -- 10 %

of the radiation of the old CT systems, and so fast that we can do kids aged

2 1/2 and up without sedation if you can bribe them to sit stil for 40

seconds. Definitely worth looking around for.

Sheri

>Message 14

> From: " Deb DiAnni " babydewe2@...

> Date: Fri May 19, 2006 8:06pm(PDT)

>Subject: Re: No testing?!

>

>Hi Sara,

> We went through a few ENT's before finding one that would order tests

>for .

>

> The first ENT we saw was right after her official diagnosis. He spent

>maybe all of 5 minutes with us. Told us what type of loss she had (we

>already knew from the audi), said that she wasd probably born with it,

>asked if anyone else in our family had a hearing loss, and told us that she

>would need aids. That was it. He was cold and had practically no bedside

>manner. We found ENT #2. Much more personable, but this is the one that

>tried to flush 's ears with water (simular to a water pick). Bad

>move for a 2 year old. He had mentioned about getting some tests done

>during a early appointment but never mentioned it again. About six months

>after we started with him he up and left the clinic and we had no idea

>where he had gone. On to ENT#3. By this time I knew that I wanted some

>work-ups to look for some causes of her loss. I also knew that I wanted

>her to have a CAT scan. He was willing to order the blood work, but told

>me that she was too young for a CAT

> scan. His words were that she was too young to lay still enough for the

>test. She was 4 at the time. He was nice..fairly good with , but it

>was at this time I started to hear more about pediatric ENT's and thought

>that maybe we should give this a try. So we moved onto our current ENT #4.

> She is great. At our first appointment she spoke about all of the

>testing that we should be doing. She immediently ordered a CT scan of her

>temporal lobe. I didn't even have to ask for it. This is also the ENT

>that I took to after he had had many ear infections.

>

> So it's our experience that not all ENT's will order tests in a routine

>manner to look for potential causes. When I was trying to justify getting

>the testing with the other ENT's I would always say that I needed to know

>if her loss was being caused by something that may have implications later

>on down the line (Usher's, LVAS, Connexin, etc).

>

> I know that things are still very " confused " down there. I hope that

>you are able to see the right people soon.

>

> Debbie, mom to , 6, moderate SNHL and , 3, hearing

[Guest guest]

Sheri,

Wow! Thank you for posting the info re Xoran. We have been holding

off on the CT due to the sedation issue.

BEst,