Re: new and have some questions

August 1, 2006

In a message dated 8/1/2006 8:23:38 P.M. Central Standard Time,

jdsacco26@... writes:

So, that makes me think there is an issue with the ear

mold or hearing aid - his ear is red on the inside

Hi , welcome to the list. Whenever my earmold starts a sore in my

ear, it usually turns red and can sometimes be really painful. I have a

medicine that I use when this happens-- unfortunately I can't find it right now

so

I have no clue what it is. I got it from our ENT. You will want to keep

the earmold off for a few days and give it time to heal. I have had some sores

that take up to a week to heal.

Putz

Illinois Families for Hands & Voices

_www.handsandvoices.org_ (http://www.handsandvoices.org/)

_www.ilhandsandvoices.org_ (http://www.ilhandsandvoices.org/)

Email: support@...

August 1, 2006

> Hi everyone

> My 6 month old son, Andy, has been diagnosed with a mild to moderate

> loss in his right ear and a moderate to severe loss in his left. We

> got his hearing aids a week ago today. He's done great until the

> last 3 days. At first, he never touched them and actually smiled

> whenever they went in. However, over the last few days, he is

> consistently pulling out the right hearing aid. He does not touch

> the left at all. Even when the aid is out, he's touching his ear. We

> went to the Pediatrician today and his ears are clear - no ear

> infection. So, that makes me think there is an issue with the ear

> mold or hearing aid - his ear is red on the inside. We are going

> back to duPont tomorrow to have it looked at. I know that babies

> have their ear molds redone a lot. My question is: (1)

> realistically, how often is often? and (2) any ideas on the redness

> or tips for good products that may help if they tell me tomorrow

> that his molds fit fine?

>

> Also, any advice from any of you to a family just starting out on

> this journey would be greatly appreciated! I have an older daughter

> (hearing) who is almost 3. She's done great with the hearing aids

> and is a good informer when Andy pulls them out! Both my husband and

> I and our families have signed up for sign language courses. Andy is

> in speech therapy and EI is sending a teacher for the deaf out

> tomorrow for an eval. That about sums up where we are.

>

> thanks in advance to all who respond and I look forward to learning

> much from everyone here!

>

If the ear is red, then I would think the mold does not fit correctly.

This does not necessarily have anything to do with the idea that molds

need to be remade frequently in babies---it just sounds like it was not

made correctly for that ear. When molds need to be remade due to

growth, they are loose in the ears, not making red marks, in our

experience.

As far as keeping the aids in once the redness it taken care of, I

highly recommend Hanna Andersson pilot caps. I think our daughter who

is now almost 20 months old wore them nonstop for nearly a year. They

helped a lot at first, but later on just slowed her down. They keep the

hearing aids from flopping around as well as being a barrier between

fingers and hearing aid.

I also crocheted a strand of embroidery floss to connect the two hearing

aids to one another (and through the pilot cap's tag) to help keep the

hearing aids from going too far if they do get pulled off. Now we just

use the crocheted strand to be mostly a visual for me that the aids are

still on. In other words, if I see the strand hanging from each ear I

know she has not grabbed them and thrown them somewhere.

Hearing aids can be fun for teething, depending upon what your child's

personality is, so be ready. You may end up sending one or both in for

repairs. We have had both cases replaced due to chewing. Fortunately,

they were under warranty at the time.

It sounds like you are thinking about a lot of things.

Many people might say that sign language would be unnecessary with the

loss your child has, but we have found it invaluable in understanding

our daughter as she learns to speak. It cuts way down on frustration

levels and most words that she speaks are ones she first learned to

sign.

Just keep doing what you are doing, and come here for questions. This

is a great resource. I keep filing away ideas for when my daughter hits

school age as I read other questions and responses.

in Manassas, VA

Mom to Lillian 4, hearing and n, 20 months, moderate/moderately

severe SNHL

August 1, 2006

Hi and welcome . I'm and I have a 14 year old daughter who was

diagnosed with a moderate-severe loss in both ears at nearly 4 years old. It was

a congenital loss but in the days before newborn screening. So congratulations

on your early diagnosis. Maggie has worn hearing aids and used an FM until the

teenage years. Now she just uses hearing aids. She is a graduate of auditory

verbal therapy, listens and talks and has always been mainstreamed. She has

done very well in school which we know is due to the auditory verbal foundation

she had. She has had a bit of additional hearing loss in the highs and lows but

remains in the category of moderate to severe. We chose to go oral since she

had a good bit of language when she was diagnosed. She has learned a small bit

of sign at summer camp. We can't find any sign classes here, we tried to do it

this summer. If we had an infant and we wanted/needed to learn sign we would be

in a pickle!

Have you read much about hearing loss in children?? A great place to start is

Choices in Deafness by Sue Schwartz. If your local library doesn't have it,

ask them to get it via interlibrary loan. Another book that is great is

Facilitating hearing and Listening in Young Children by Carol Flexer. It too

is available by interlibrary loan, it is also on Amazon but is fairly expensive

- but worth gold. Its very parent friendly and helps you understand how the

hearing loss effects kids and how to begin to work on building auditory skills.

I see your little guy is already getting speech therapy, are they working on

auditory skills and language??? Any book by Luterman is great about the

emotional aspects of raising a child with hearing loss. I'm sure others here

will have lots of other great suggestions. There's no one right answer or one

right way to do things, we can each only share what has worked for our family.

in GA

August 1, 2006

>However, over the last few days, he is consistently pulling out the

right hearing aid. "

Our daughter pulled her BTE hearing aids very soon after receiving

them (she was 5 weeks old when she got her BTEs). In her case, I

think that they were an attractive nuisance, so we opted for the

soft material ITEs--which our daughter tolerated 1000 times better.

Also, as I recall her outer ears never turned red with her BTEs/

Earmolds.

Perhaps your child's pulling out the right BTE because of bad

earmold fit, or perhaps he is either not getting enough benefit from

the aid or conversely too much gain.

I would definitely check to make sure there hasn't been a change in

your child's hearing levels.

You know, when it comes to HOH babies there is so much that falls in

the " unknown " category. For all anyone knows, your kid could be

right handed and simply favor yanking on his right BTE. The best

advice I have is to trust your gut, unscientific yes, but almost

always accurate.

Best,

August 2, 2006

,

Hi and welcome. I have a sx year old son with a mod/severe loss in one ear

and hig frequency loss in the other. He was only diagnosed last year, so I

can't be of much help with the baby stuff. (Except to say good for you to

have somehow managed to get him diagnosed so early!)

Trish

Also, any advice from any of you to a family just starting out on

this journey would be greatly appreciated! I have an older daughter

(hearing) who is almost 3. She's done great with the hearing aids

and is a good informer when Andy pulls them out! Both my husband and

I and our families have signed up for sign language courses. Andy is

in speech therapy and EI is sending a teacher for the deaf out

tomorrow for an eval. That about sums up where we are.

thanks in advance to all who respond and I look forward to learning

much from everyone here!

August 2, 2006

Hi, ,

We have a 21 month old daughter with a mild-moderate bilateral loss,

diagnosed at birth. Our answer to Jordan pulling out her hearing

aids was also the Hanna Andersson caps, which worked miraculously.

In terms of communication options, we decided to go the oral route,

working with an Auditory-Verbal (AV) therapist, despite many who

urged us to sign. Because we were committed to this process and were

in touch with many other parents with oral children (including some

on this list) who had had positive experiences with AV, as well as

professionals, this is what we wanted for our daughter.

Every child is unique, but there is no question that this was the

right decision for our daughter - she is an auditory learner and was

bursting out with words before she was a year old. Her " frustration "

is what led her to talk! For me it was about trying the AV approach

first and developing the auditory skills as Carol Flexer talks

about.

The best resource for me was the AG Bell organization,

http://agbell.org/DesktopDefault.aspx.

Good luck!

Deganit, mom to Jordan, 21 months, mild-moderate hearing loss

>

> Hi everyone

> My 6 month old son, Andy, has been diagnosed with a mild to

moderate

> loss in his right ear and a moderate to severe loss in his left.

We

> got his hearing aids a week ago today. He's done great until the

> last 3 days. At first, he never touched them and actually smiled

> whenever they went in. However, over the last few days, he is

> consistently pulling out the right hearing aid. He does not touch

> the left at all. Even when the aid is out, he's touching his ear.

We

> went to the Pediatrician today and his ears are clear - no ear

> infection. So, that makes me think there is an issue with the ear

> mold or hearing aid - his ear is red on the inside. We are going

> back to duPont tomorrow to have it looked at. I know that babies

> have their ear molds redone a lot. My question is: (1)

> realistically, how often is often? and (2) any ideas on the

redness

> or tips for good products that may help if they tell me tomorrow

> that his molds fit fine?

>

> Also, any advice from any of you to a family just starting out on

> this journey would be greatly appreciated! I have an older

daughter

> (hearing) who is almost 3. She's done great with the hearing aids

> and is a good informer when Andy pulls them out! Both my husband

and

> I and our families have signed up for sign language courses. Andy

is

> in speech therapy and EI is sending a teacher for the deaf out

> tomorrow for an eval. That about sums up where we are.

>

> thanks in advance to all who respond and I look forward to

learning

> much from everyone here!

>

August 2, 2006

Hi, ,

My son¹s hearing loss was identified at birth; his is severe to profound. In

the beginning, we remade his molds every two weeks; by six months, I think

it was still monthly to about every six weeks. I know we were in the audi¹s

office pretty frequently! If he keeps pulling it out, and it¹s a new mold,

have them make a new one. I think most companies will do a complimentary

remake within a certain timeframe (for us it¹s a month; when my son was an

infant, it was six months). The molds can look fine, but may be rubbing

badly. Also make sure the setting is right for that aid ‹ not too high, not

too low. Hard to tell with an infant, I know, but if he¹s pulling the aid

out, something is going on.

Good luck,

Stefanie

Mom to Ben, 7, severe to profound HOH, and Isabella, 11, mild loss

on 8/1/06 9:22 PM, jdsacco26 at jdsacco26@... wrote: