Progressive Loss & Negative Pressure

[Guest guest]

Hi Everyone,

Does anyone on the list have children with progressive hearing loss? My

daughter's loss just keeps getting worse and worse every time she is

tested, which is generally every 3 months, sometimes less. On top of

that, she has a history of negative pressure in her ears sometimes

without the apparent presence of fluid. The pressure causes temporary

drops in her hearing as well. Now that her audiogram has her pegged in

the profound range, these drops are much more damaging to her

educationally as she isn't functioning well unless she wears her FM. Do

any of you have this problem? What do your doctors say? The ENT we go to

here won't even see us until the end of October and he is considered the

best in the area. She needs help now! I'm trying to get into an

allergist as well, but he won't see her until November 9th. I've asked

the school's audiologist to intervene as well as the pediatrician. So

far to no avail.

was tested at the Lenox Hill Cochlear Implant Center in August.

She wasn't quite yet a candidate, but we know she will be pretty soon if

not now. We live in St Louis during the school year so she can attend an

oral school.

Any advice or suggestions will be most appreciated. I'm at my wits' end.

a

[Guest guest]

We wash the ear molds every other day with just plain dish soap, but I bet you

could use a Neutragena hypoallergenic liquid soap with the same results.

Also, I think the Dry & Store has a disinfecting cycle on it does it not? We

don't have a moisture problem, so I've never used it but I think I've hear Dixie

make some references to it.

Sheri

[Guest guest]

Dear a, I was reading about your daughters fluid problem and the

doctor saying he didn't see anything. Well when Alesha was younger and they

would do the tymp on her is was always flat and no one ever seen

anything just by looking. She had fluid until she was a year old and I

found a doctor that would put tubes in. When the doctor was done he said

Alesha didn't have much fluid at all but her ears were full of wax.

Which no one ever seen and her ears have been checked by many different

people but no one seen it. Alesha has never had an ear infection in her

life so medicine wouldn't help.

You keep fighting because if the tymp is coming up flat then there is

something causing it. We went through two other ENT's before we found one

that would do something and that listened to us and didn't act like

we we're wrong for asking questions and wanting results. It took us a year

to find a good doctor and he is wonderful. Well that's my two cents

Good Luck at the Doctor's office. Priscilla

>

>Reply-To: Listen-Upegroups

>To: Listen-Up <Listen-Upegroups>

>Subject: Re: Progressive Loss & Negative Pressure

>Date: Wed, 11 Oct 2000 09:51:18 -0500

>

>Sheri:

>

>Thanks for your response. How interesting that you mentioned removing

>milk from Patty's diet. was lactose intolerant as a baby and

>yesterday I decided that I was going to do a " test " and remove all the

>dairy products from her diet. Lately she has been eating a lot of yogurt

>for lunch and she drinks milk everyday. She has been on Zyrtec for about

>a week and a half but it doesn't seem to be helping her during the day.

>I give it to her at night before bed as all medications seem to make her

>sleepy. We're going to the ENT today (after numerous phone calls!) so

>we'll see what he says. The last time I went to him he was not at all

>helpful. She had a flat tymp and he looked at me and said, " I don't see

>any fluid, " and stared at me blankly. I had to push for an antibiotic

>and then her ear was fine soon after.

>

>BTW, what do you use to disinfect her hearing aids? I'm hesitant to put

>anything on the molds as she is allergic to chemicals and fragrances.

>

>Thanks,

>

>a

>

_________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.

Share information about yourself, create your own public profile at

http://profiles.msn.com.

[Guest guest]

Sheri:

Thanks for your response. How interesting that you mentioned removing

milk from Patty's diet. was lactose intolerant as a baby and

yesterday I decided that I was going to do a " test " and remove all the

dairy products from her diet. Lately she has been eating a lot of yogurt

for lunch and she drinks milk everyday. She has been on Zyrtec for about

a week and a half but it doesn't seem to be helping her during the day.

I give it to her at night before bed as all medications seem to make her

sleepy. We're going to the ENT today (after numerous phone calls!) so

we'll see what he says. The last time I went to him he was not at all

helpful. She had a flat tymp and he looked at me and said, " I don't see

any fluid, " and stared at me blankly. I had to push for an antibiotic

and then her ear was fine soon after.

BTW, what do you use to disinfect her hearing aids? I'm hesitant to put

anything on the molds as she is allergic to chemicals and fragrances.

Thanks,

a

[Guest guest]

Yes, the Dry & Store does run a disinfecting cycle every time you use it.

I'm not sure if the cycle would replace washing the ear molds, though, if

that's a concern.

Dixie

> We wash the ear molds every other day with just plain dish soap, but I bet

you could use a Neutragena hypoallergenic liquid soap with the same results.

>

> Also, I think the Dry & Store has a disinfecting cycle on it does it not?

We don't have a moisture problem, so I've never used it but I think I've

hear Dixie make some references to it.

>

> Sheri

>

[Guest guest]

We've had the Dry & Store unit for 5 months now, and really like it.

Re: Re: Progressive Loss & Negative Press

We wash the ear molds every other day with just plain dish soap, but I bet

you could use a Neutragena hypoallergenic liquid soap with the same results.

Also, I think the Dry & Store has a disinfecting cycle on it does it not?

We don't have a moisture problem, so I've never used it but I think I've

hear Dixie make some references to it.

Sheri

eGroups Sponsor

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]

Dear a,

Sorry I am behind on mail too..... is now 8 and was implanted

in August of 99 at age 7. Holly is 6 and was implanted in December of 99 at

age 6.

and Holly both had wonderful success with their hearing aids using the

auditory verbal method, but because they have progressive losses when their

losses became great enough to qualify for the implant we felt it was the next

logical step. The implant has opened the door for them to have greater

access to the language the understood and to acuire language through eves

dropping and even through a closed door. The progress has been wonderful and

we have found with the implant and ease in learning language that we didn't

not have with the aids. Basically with the aids language was brought to them

on a silver plater...now the have the potential and are achieving so many

goals working much less hard. I hope this helps a little, again please feel

free to ask me anything