Re: Cochlear Implant - Advice needed

[Guest guest]

Jody -

I don't know if anyone on the list has been there, but I know many

CHARGE kids in IL have gone to Carle Clinic at U of I for implants. Our

DB specialist from J Rock is knowledgable about it since she has

those kids on her case load. Maybe your PJR person could give you more

info.

Michele W

Aubrie's mom

[Guest guest]

Jody,

Our daughter , who is 2 3/4, received a cochlear implant in July of 2003.

Her situation is somewhat similar to Ethan's in that the auditory nerve in her

left ear was not intact, but it was in the right. However, the cochleas in both

ears were underdeveloped (1 1/2 turns versus the normal 2 1/2 turns), so she was

getting very little benefit from a hearing aid on her right ear. So it wasn't a

difficult decision for us to choose to implant since hearing aids weren't

proving to be a good option for her.

So far, hasn't gotten a lot of benefit from the implant that we can see.

She does seem to have a little receptive ability with it, but it has been very

slow and sporadic. Still, we've been told to be patient, and her audiologist is

experimenting with different MAPs for her. We all believe that she has so many

other issues going on (she has sensory integration problems and is missing her

vestibular system, and so has balance problems and motor delays), that the

hearing and language process may be very slow to come about for her.

Has your audiologist or ENT mentioned the possibility of Ethan having auditory

neuropathy? That's what was diagnosed with. It's basically where the

receptive ability is very inconsistent and may vary from day to day, even hour

to hour or minute to minute, for the child. I'm sure there are probably some

good articles on the Internet where you could read up on this and see if some of

the symptoms seem to apply to Ethan. Generally, CIs are pretty successful in

kids with auditory neuropathy, but we're wondering if this may be causing some

of 's delays with the CI when coupled with her other issues.

was implanted by Dr. Choo at Cincinnati Children's Medical Center.

They have a great CI team, and Dr. Choo is well respected in the CI community

across the country. Let me know if you'd like his number. was the first

patient there with CHARGE to receive a CI, but I understand from Dr. Choo that

he has several more potential candidates at this time. I'm not sure what he'll

be able to tell you since was his first and still remains a mystery, but I

do know that he thinks she is benefitting from the implant even though progress

is slow and that he's determined to help her get more consistent receptive

benefit.

Good luck in your choice, and let me know if I can answer any other questions

for you.

K. in OH (mother to , 2 3/4, CHARGE, and wife to Arlin)

__________________________________________________

[Guest guest]

Hi Jody,

We had Susie`s Cochlear implant done here in Canada, and our experience

has been a great one, we are so glad that we decided to do this for her.

Susie`s surgery didn`t result in any facial palsy.

We had reservations about putting it in her good hearing ear also, but with

the implant she is hearing at between 20-30 db. And is in a grade two class

at the public school down the road, and is working at a grade one level. She

is talking very well and is understandable by us as well as strangers. And

is reading at a beginner level. So for us it was the best decision to get

the implant. I wish you well with your decision, it isn`t an easy one to

make. If you have any more questions don`t hesitate to ask.

Debbie Cachia, Mom to Susie, going to be 7 on October 22!!

dcachia@...

Subject: Cochlear Implant - Advice needed

We have been looking into a cochlear implant for Ethan for about a year now.

And since he has recently been more medically stable, we were finally able

to sedate him for a CT and MRI. The MR indicated that Ethan has no cochlea

nerve in his left ear (which has never had any responses on an ABR) and has

normal cochlea in his right ear (hearing has fluctuated from 70-90 db). He

has been wearing a hearing aid in his right ear since he was 3 months old.

Ethan's hearing has been a mystery to many doctors and therapists as to why

he does not respond to voice and inconsistently responds to some sounds. We

have gone to an Aural Therapist and now see a Developmental Therapist for

Hearing, but with not much success with either on getting him to learn to

listen to the sounds in his environment. The ENT from Children's Hospital in

Chicago has said that medically he would be an implant candidate for his

right ear. We are somewhat hesitant to implant this ear as it is his " good "

hearing ear.

I have a few questions for those parents of CHARGE kids who have been

implanted:

1. What has your experience been - good or bad results?

2. Has anyone had an implant on an ear which had facial palsey on the same

side?

3. Can anyone recommend a doctor in the Midwest who had implanted a CHARGE

child for a second opinion?

Thanks in advance for your insight.

Jody - mom to Ethan (2 yrs - ChARGE) and (5)

[Guest guest]

Hi Jody, We live north of chicago near the lake. My daughter is 13

and was implanted when she was six years old at Milwaukee childrens

hospital. was implanted on the right side which is also the side

where her facial palsey is. I was warned that with her facial defects the

nerve might not be in the right place and I remember being scared that they

might sever it. All went very well with no complications. I am very glad she

has an implant but she is not saying anything more than mom. She does hear

now and will respond to enviromental sounds. has always gone to a

school for the hearing impaired and they have been very good about learning

more about how to teach . She is the only charger they have ever

had. She was also the most severly disabled student they had ever worked

with. Peggy

>

>Reply-To: CHARGE

>To: CHARGE

>Subject: Cochlear Implant - Advice needed

>Date: Wed, 13 Oct 2004 19:13:47 -0700 (PDT)

>

>We have been looking into a cochlear implant for Ethan for about a year

>now. And since he has recently been more medically stable, we were finally

>able to sedate him for a CT and MRI. The MR indicated that Ethan has no

>cochlea nerve in his left ear (which has never had any responses on an ABR)

>and has normal cochlea in his right ear (hearing has fluctuated from 70-90

>db). He has been wearing a hearing aid in his right ear since he was 3

>months old.

>

>Ethan's hearing has been a mystery to many doctors and therapists as to why

>he does not respond to voice and inconsistently responds to some sounds.

>We have gone to an Aural Therapist and now see a Developmental Therapist

>for Hearing, but with not much success with either on getting him to learn

>to listen to the sounds in his environment. The ENT from Children's

>Hospital in Chicago has said that medically he would be an implant

>candidate for his right ear. We are somewhat hesitant to implant this ear

>as it is his " good " hearing ear.

>

>I have a few questions for those parents of CHARGE kids who have been

>implanted:

>1. What has your experience been - good or bad results?

>2. Has anyone had an implant on an ear which had facial palsey on the same

>side?

>3. Can anyone recommend a doctor in the Midwest who had implanted a CHARGE

>child for a second opinion?

>

>Thanks in advance for your insight.

>

>Jody - mom to Ethan (2 yrs - ChARGE) and (5)

>

>__________________________________________________

>

[Guest guest]

Jody,

My 6 year old daughter has been implanted for 4 years now. I wouldn't trade

it for the world. Although she certainly hasn't aquired the skills that a

regular Deaf child would have by now, I am more than happy with our results.

She tests around 30-40dbls. in the booth, understands much of what she hears

and is very slowly aquiring some speech. I don't think she'll ever be an

oral child, but heck, I'll take just hearing.She wasn't implanted on her

palsy side, but only because that cochlea was so deformed. When the dr. got

in there he saw that her facial nerve is actually attached to her cochlea.

He was concerned about stim, but it hasn't been a big problem. It is

noticable, but doesn't bother her. The surgery was great and she was

standing on her head the next day.

My biggest problem was fighting with the proffesionals about sign language.

They insisted I stop using it and I insisted they jump in the lake.

Everything is great now. MacKenzie is in grade 1, doing the regular program

and loves school. She'll be getting an interpreter next year. Feel free to

contact me privately with an other questions.

Jeanie Colp

mom to MacKenzie 6 CHARGE, Tyler 13 & Zachary 10>