Re: AJ

[Guest guest]

Hi Lori.

Do you find your daughter's hearing flucuatates because she is tired or the

enviorment, both or it just does. I keep track of so many things with AJ.

She doesn't eat food. She drinks a supplement. Right now she is just full

of hives and I can't tie it into anything. What is one more thing to keep

track of?!? Thanks.

Phyllis

[Guest guest]

Hi Phyllis,

My daughter has a mild to moderate low frequency loss and

when she is tired and has not napped her hearing goes way down. We give her

Claritin 2ml twice a day. Her Pediatrician is the head of allergy at Hopkins

and he told us to skip all the testing and try the medication and see if it

makes a difference. To tell you the truth, I am not sure it makes a lot of

difference but it seems to stop her from drinking fluids all day long. This

could be good or bad depending on why she is losing her hearing. We just

cant seem to find the answer as yet.

Another mom of a child on this list told me yesterday to be careful

with the medication because sometimes it may have something in it that does

more harm then good as far as allergies go. So I would always check to see

what additives are in any medicine you give to your child, even over the

counter vitamins and Tylenol have been a problem for . As a matter of

fact whenever I gave her Elmo vitamins she got a cold.

To adress your post on Doctors. Your guess is as good as mine. The

only person that has helped us in any way is our Audiologist and we had to go

to 4 different ones until we found one that knew how to work with children.

The head pediatric ENT at Hopkins was a joke. He looked in her ears for 2

seconds and said, Healthy Ears. End of story. We are looking into seeing a

nerologist/ENT but I think these hard of hearing kids just fall through the

cracks. Not quite normal, not quite disabled.

I think the future will show that a lot of behavior problems occur

from mild to moderate hearing loss. My daughters ears work but because of

the loss she does not hear all of the letters and understanding what people

say to her is impossible. Can you imagine what it is like to live in a world

where you just cant figure out what is going on because you dont hear well

enough to understand. I wish there was a way to help the " specialist " who do

not understand hearing loss to understand what our kids are hearing. I have

even handed out ear plugs to help her SLP understand but it's useless.

I just gave up and get my support from all of you. Thank god for

this list.

Have a great weekend,

Hi Lori,

Sheri

[Guest guest]

In a message dated 7/24/99 4:58:38 AM Pacific Daylight Time,

SDunnstern@... writes:

<< The

only person that has helped us in any way is our Audiologist and we had to

go

to 4 different ones until we found one that knew how to work with children.

>>

Hi Sheri,

I know u live in Md.-where did u find a pediatric audiologist? I'd like to

go there. You can write me personally.

Tks

Terry

[Guest guest]

> Thanks Orla. I don't know anything about Auditory Neuropathy and Central

> Auditory Processing Disorder. I am going to look into it and mention it

on

> August 3rd. Phyllis

You can find info on Auditory Neuropathy on this page:

http://members.tripod.com/listenup/med2.htm

A page on CAPD is in the works.

Hugs,

Kay

[Guest guest]

Hi Phyllis! Audrey experiences tinnitus. she tells me there is a bee in her

ear. I should say she doesn't tell me she screams it at me. She definitely

very tired after an episode. We then go in and document by a hearing test. I

keep a diary and write down how she seems to be daily. I do know it's very

hard for a child to tell you they have tinnitus especially if it's ringing

because most often they think everyone is hearing the same thing they are.

Because Audrey's hears a buzzing it's easier to know when she has an episode

if not I would have to watch all behavior patterns to be able to tell if her

hearing is off. one time last week she was crying she couldn't hear. It was

so sad to see. Five minutes later she was so excited to tell me she could

hear again. I imagine it must have been the longest 5 minutes not being able

to hear and trying to tell her she is O.K. I don't know if it helps but

definitely write again and maybe I can tell you some of behaviors she

exhibits. I do know she screams more, balance is off a bit and you have to

constantly repeat any directions.

[Guest guest]

Sheri-

AJ doesn't have the option of medicine. Her system can't handle it, even

tylenol. She can't afford to stop drinking. That is all she can do, drink

formula.

Remi has a neurosurgeon who I consult with often, usually about spina

bifida. I asked his opinion on doctors. Should we see him? If not, who,

if anyone. He was at St. 's Hospital for Children in Phila, and

is now at the Hershey Medical Center. I didn't want to bother him, but I am

really bothered everytime I get a huh or what. I feel like more could or

should be done. I will let you know if he recommends a neuro/ENT. Philly

or Hershey isn't that far. AJ has seen two doctors from Hopkins. Dr.

Sampson, allergy, who is now at Mt. Sinai in NYC and Dr. , GI,

who is now at St. Chris. Personally, we would go anywhere.

Gotta run. The kids want to go swimming. AJ is happiest in water.

Phyllis--mom to

AJ (12/22/95) EG, GERD, Asthma, Allergies, speech delay and hearing loss

Remi (8/3/92) Spina Bifida, LATEX, peanuts, shellfish, & nut allergies

[Guest guest]

Hi. Thanks for tellling me how you handle Audrey. We are so focused on

moods and behaviors in conjunction with foods, meds, enviornment.....I

thought I was just starting to get a handle on that. I don't know if I can

incorporate hearing too. I wish she would just tell me-my ears are buzzing,

I can't hear today or my stomach hurts etc..... That would just be too

easy. What behaviors does Audrey exhibit, if you don't mind me asking?

Maybe I am correlating the behaviors with the wrong thing. AJ's off

behaviors are withdrawing, sucking on her fingers, whining, clinging, to

name a few. We think these are due to stomach pain. Phyllis

[Guest guest]

In a message dated 7/22/99 11:34:00 PM Eastern Daylight Time,

pmzf@... writes:

<< AJ has me worried though. She seems very

frustrated right now with speech. I don't know if it is because we are

dwelling on it and asking her to try and pronounce things correctly or what.

I hadn't sensed this before. She really bummed me out the other day. She

got a new harmonica. She told me it didn't work after playing with it. I

asked her what was wrong. She said it didn't make music. It did, but she

couldn't hear it. She supposedly only has a mild loss and only in one ear.

Maybe I am the one dwelling and so tuned into everything she does and says,

that I just see so much more and her hearing hasn't changed. I don't know.

Thank you for all your input.

Phyllis

>>

Phyllis,

Have they done OAE testing? My son has Auditory Neuropathy and he appeared

to hear some days and not others. He tested with a moderate loss in the

booth but his brainstem (ABR) testing was absent. He did have OAE's...and

that completed the diagnosis. People thought I was nuts because I swore he

responded some days and not others.

You may want to check it out. E-mail me if you have any questions.

Elaine

[Guest guest]

> If she gets fluid and gets rid of it, that is why her hearing

>fluctuates. & nbsp; I guess I am so used to fluid=ear infections.

My son showed no sign of infections, but his tympanogram was totally flat

-- he had tubes put in, and has had no problems since (with fluid, anyway).

I don't know if that would help your daughter, since the fluid seems to

come and go...just a thought.

Stefanie