New member intro -- Annie

[Guest guest]

Hi,

My name is Annie and I live in Ohio. My daughter Molly, age 9 , was recently

diagnosed with moderate bilateral low frequency sensorineural hearing loss. She

just got her purple Oticon Gaia digital hearing aids on July 6th.

Molly was adopted from China at the age of 3 1/3 years old and has been home

almost 6 years now. Molly has had many obstacles to overcome in her life so

far. Molly lived in an orphanage in Southwest China for her first 3 years of

her life, she was adopted as a toddler and came to a new country. She had to

learn to live in a family, she learned her second language --English, and had to

catch up physically and developmentally. Molly was diagnosed with growth

hormone/IGF-1 deficiency in the Fall of 2005 and takes on daily growth hormone

injections.

A little more about Molly's hearing loss....

In 2002, I was noticed Molly not hearing me sometimes. She tends to concentrate

on watching peoples lips when she's trying to hear or understand. I attributed

this to her ESL (English as a Second Language) difficulties. Molly had an

audiogram at her ENT that showed normal hearing. She had excess wax and once

that was removed she said she could hear fine.

In the Fall of 2005, I began noticing that Molly was not answering me when I

called from another room. Also, when I would stand behind her and talk to our

other children, the others would hear what I said....and Molly didn't. No one

else noticed this so I doubted myself for a while. Her teachers said they

didn't notice anything--but Molly is hyper-vigilant in school.....always trying

to stay one step ahead.

Finally, I promised myself that I would have her hearing tested after Christmas.

We started at the pediatrician. She did a basic test with an ear probe that

showed she did have hearing loss. She referred me to the ENT.

In February2006 , Molly saw the ENT and had an audiogram. This test showed a

marked difference from her test in 2002. She had moderate (50 dB) bilateral low

frequency sensorineural hearing loss. The ENT ordered a battery of tests

including a CT of her temporal bones, MRI, and lots of blood tests. He also

put her on a course of steroids. In March, she went back to the ENT, had

another audiogram that showed the loss had stayed the same. No improvement from

the steroids. All her tests came back normal except she was positive for CMV

(cytomegalovirus).

The ENT suggested we see an otologists, Dr. Megarian, at Rainbow. In March

2006, Molly had another audiogram that showed the loss had stayed the same. Dr.

Megarian concurred with the ENT. He said the ENT did all the test he would have

ordered. Dr. Megarian could not say for sure if the loss will progress. What

is the cause? He's not sure either. Odds are, he said , that it's genetic.

(we have no family history nor will we ever.) Other possibilities that are less

likely: nerve damage from a high fever she had last year, maybe it's the

CMV--but the MRI did not reveal any central nervous system scarring from the

CMV, or it could be Meniere's...Molly also has some periodic vertigo--but no

tinnitus.

We decided to go ahead with the hearing aids as suggested by all the

audiologists and Dr.'s. I also thought getting used to them before school

started was a good idea. . She was fitted with them on July 6th. Molly picked

out purple/clear ear molds and purple BTH cases. She loved this part :-) The

process of getting used to them was harder than I and Molly thought. I had no

one to talk to about this until I found your group! In reading some of the

archives, I see this is a common thing. The audiologist has made a series of

adjustments and things are going so much better. We still have a small running

list of things that are too loud/sound weird but she keeps the aids in 8 + hours

a day now. She was also having pain from one ear mold and pain on the backs of

her ears. That's much better now too. We started using some " Oto-Ease " to

slide the aids in easier and that has helped so much!

Recently Molly has said a few things that make me know we are on the right

track......she said..... " Mom! I heard you talking behind me! Wow, that's really

COOL! "

and ......... " Mom, I love my hearing aids. Can you put them in please? "

I look forward to learning more about hearing loss and hearing aids from this

list! THANKS!

~Annie

Mom to Molly, age 9, moderate bilateral low freq. SNHL

and twins & , age 14, hearing