Re: CHARGE and Cochlear Implants

[Guest guest]

,

My sone first got an implant at 2 1/2 and he got very poor response

for the next 3 1/2 years. They kept tryint to remap and finally the team decided

to try a second implant on the same side. We had that put in last April and

in May he still couldn't hear anything. So they determined that Bryce would

probably never hear anything. But we kept the implant on. Well, lo and behold

about 6 months later, his speech therapist thought he was turning to sound.

After

4 years of disappointing results, I refused to get my hopes up but we went

back for another test in December and sure enough he was hearing across the

board. What a Christmas gift! No one at the implant center can explain it except

to see that Charge kids sometimes take longer to have their neurological

systems adapt to the implants. They all cried with me when we go the results.

They

had tried so hard to get Bryce to hear. Now 6 months later, he is learning to

listen and doing pretty well. He still does not process speech but we are

hopeful.

Hang in there.

Deedee , Mom to Bryce, 7 who has been hearing for about 7 months

[Guest guest]

,

My sone first got an implant at 2 1/2 and he got very poor response

for the next 3 1/2 years. They kept tryint to remap and finally the team decided

to try a second implant on the same side. We had that put in last April and

in May he still couldn't hear anything. So they determined that Bryce would

probably never hear anything. But we kept the implant on. Well, lo and behold

about 6 months later, his speech therapist thought he was turning to sound.

After

4 years of disappointing results, I refused to get my hopes up but we went

back for another test in December and sure enough he was hearing across the

board. What a Christmas gift! No one at the implant center can explain it except

to see that Charge kids sometimes take longer to have their neurological

systems adapt to the implants. They all cried with me when we go the results.

They

had tried so hard to get Bryce to hear. Now 6 months later, he is learning to

listen and doing pretty well. He still does not process speech but we are

hopeful.

Hang in there.

Deedee , Mom to Bryce, 7 who has been hearing for about 7 months

[Guest guest]

,

My sone first got an implant at 2 1/2 and he got very poor response

for the next 3 1/2 years. They kept tryint to remap and finally the team decided

to try a second implant on the same side. We had that put in last April and

in May he still couldn't hear anything. So they determined that Bryce would

probably never hear anything. But we kept the implant on. Well, lo and behold

about 6 months later, his speech therapist thought he was turning to sound.

After

4 years of disappointing results, I refused to get my hopes up but we went

back for another test in December and sure enough he was hearing across the

board. What a Christmas gift! No one at the implant center can explain it except

to see that Charge kids sometimes take longer to have their neurological

systems adapt to the implants. They all cried with me when we go the results.

They

had tried so hard to get Bryce to hear. Now 6 months later, he is learning to

listen and doing pretty well. He still does not process speech but we are

hopeful.

Hang in there.

Deedee , Mom to Bryce, 7 who has been hearing for about 7 months

[Guest guest]

deedee, interesting how bryce responded later. erika was implanted with a

BAHA last June., it was finally turned on in January, we went for some more

testing today and she is improving. is almost 9, we could never tell if

she was hearing much. I think her brain is now, after 8 years of not hearing

much, starting to process the sound. she is responding more every day. i

was dissapointed when it was first turned on as we thought we saw responses

but it was obvious. now we know she is responding. now we have to see ihow

well her brain can process it. has also been trached her whole life,

(she was decannulated at the time of the implant) so speech was difficult.

Also

arrested after open heart surgery at 1yr so there is some brian

injuries here as well.

but she is starting to respond more so we remain hopeful that it is not to

late.

good luck all

cathie, mom to erika

[Guest guest]

deedee, interesting how bryce responded later. erika was implanted with a

BAHA last June., it was finally turned on in January, we went for some more

testing today and she is improving. is almost 9, we could never tell if

she was hearing much. I think her brain is now, after 8 years of not hearing

much, starting to process the sound. she is responding more every day. i

was dissapointed when it was first turned on as we thought we saw responses

but it was obvious. now we know she is responding. now we have to see ihow

well her brain can process it. has also been trached her whole life,

(she was decannulated at the time of the implant) so speech was difficult.

Also

arrested after open heart surgery at 1yr so there is some brian

injuries here as well.

but she is starting to respond more so we remain hopeful that it is not to

late.

good luck all

cathie, mom to erika

[Guest guest]

Cathie,

We are not sure yet what Bryce will process either but so far so good.

Even if he doesn't ever process speech, I'm thrilled that he can hear. But we

are hoping for the best. I'm happy for too!

Deedee

[Guest guest]

Cathie,

We are not sure yet what Bryce will process either but so far so good.

Even if he doesn't ever process speech, I'm thrilled that he can hear. But we

are hoping for the best. I'm happy for too!

Deedee

[Guest guest]

Cathie,

We are not sure yet what Bryce will process either but so far so good.

Even if he doesn't ever process speech, I'm thrilled that he can hear. But we

are hoping for the best. I'm happy for too!

Deedee

[Guest guest]

Thanks for your response, Deedee. That is SO exciting about your son! I've

read other places too that it sometimes takes CHARGE kids a lot longer to

respond to implants, so maybe it's just a wait-and-see thing with . What

kind of communication method do you use with Bryce--do you mostly sign?

We've had in an auditory/verbal program part-time ever since she had her

implant turned on, but she's not making much progress there at all. We're

thinking it might be time to look into a total communication program for her.

She's starting to show some interest in signing and has learned about 10 signs

pretty quickly.

K of OH. Mother to , 2 1/2 (CHARGE) and wife to Arlin.

[Guest guest]

Thanks for your response, Deedee. That is SO exciting about your son! I've

read other places too that it sometimes takes CHARGE kids a lot longer to

respond to implants, so maybe it's just a wait-and-see thing with . What

kind of communication method do you use with Bryce--do you mostly sign?

We've had in an auditory/verbal program part-time ever since she had her

implant turned on, but she's not making much progress there at all. We're

thinking it might be time to look into a total communication program for her.

She's starting to show some interest in signing and has learned about 10 signs

pretty quickly.

K of OH. Mother to , 2 1/2 (CHARGE) and wife to Arlin.

[Guest guest]

My child does not have a cochlear implant, so I apologize if I am speaking

out of turn here. If is showing the ability to pick up on sign

language I say go for it. It doesn't mean you give up on the oral work you

are doing with her, but if she can have language to build on won't that help

her? Many CHARGE kids struggle with picking up language at all, so I would

capitalize on this picking up of words and run with it, particularly if she

uses them expressively. Kim L

> Thanks for your response, Deedee. That is SO exciting about your son! I've

> read other places too that it sometimes takes CHARGE kids a lot longer to

> respond to implants, so maybe it's just a wait-and-see thing with .

> What

> kind of communication method do you use with Bryce--do you mostly sign?

> We've had in an auditory/verbal program part-time ever since she had

> her

> implant turned on, but she's not making much progress there at all. We're

> thinking it might be time to look into a total communication program for her.

> She's starting to show some interest in signing and has learned about 10

> signs

> pretty quickly.

>

> K of OH. Mother to , 2 1/2 (CHARGE) and wife to Arlin.

>

>

>

[Guest guest]

Ditto!

Flo

>

>

>My child does not have a cochlear implant, so I apologize if I am speaking

>out of turn here. If is showing the ability to pick up on sign

>language I say go for it. It doesn't mean you give up on the oral work you

>are doing with her, but if she can have language to build on won't that

>help

>her? Many CHARGE kids struggle with picking up language at all, so I would

>capitalize on this picking up of words and run with it, particularly if she

>uses them expressively. Kim L

>

>

[Guest guest]

Speaking of cochlear implants, we met with the audiologist today and learnt

the results of the MRI had ages ago. We had not chased them up as

we have been really reluctant to pursue the whole CI thing as it felt like

it was a very major elective surgery with no cetainty of success, risk of

facial nerve damage, yet more GAs etc etc etc. It would appear that she

does have the auditory nerve (8th cranial?), possibly on both sides. We

have agreed to go through the assessment for the CI with the audiologist

being aware that we are really ambivalent about the whole thing. The

tempting point is the fact that only has vision in one eye and there

is the perpetual fear of her losing it and her communication options being

even more limited (she has bilateral colobomas). Has anyone gone through

this whole dilemma (silly question I know) compounded by the deafblindness?

If so, what made you dicide which way to go? It is really early days to be

worrying about this when she may or may not be found to be suitable for the

implant but it is never too early to start thinking about these things and

we do not want to remain totally anti if it is likely to benefit her

significantly and improve her quality of life. I know I have probably asked

these questions before but it really is a dilemma and there is not much

point asking parents of children who are only deaf as our decision would be

infinitely easier if we were in that boat.

has fairly OK basic receptive language but no expressive as yet. We

do not expect her to be " cured " of her deafness by a CI if she has one but

if she learns to sign and can at least hear some, she has a connection with

the world even if her speach does not develop as such. Oh good grief, this

whole subject is so emotive and just about ten thousand thoughts run through

my head every time I approach it. Guess this is the time to really research

it and ask lots of questions throughout the assessment. All suggestions

most appreciated.

By the way, what does the assessment entail?

Thanks in advance.......

Flo

[Guest guest]

Speaking of cochlear implants, we met with the audiologist today and learnt

the results of the MRI had ages ago. We had not chased them up as

we have been really reluctant to pursue the whole CI thing as it felt like

it was a very major elective surgery with no cetainty of success, risk of

facial nerve damage, yet more GAs etc etc etc. It would appear that she

does have the auditory nerve (8th cranial?), possibly on both sides. We

have agreed to go through the assessment for the CI with the audiologist

being aware that we are really ambivalent about the whole thing. The

tempting point is the fact that only has vision in one eye and there

is the perpetual fear of her losing it and her communication options being

even more limited (she has bilateral colobomas). Has anyone gone through

this whole dilemma (silly question I know) compounded by the deafblindness?

If so, what made you dicide which way to go? It is really early days to be

worrying about this when she may or may not be found to be suitable for the

implant but it is never too early to start thinking about these things and

we do not want to remain totally anti if it is likely to benefit her

significantly and improve her quality of life. I know I have probably asked

these questions before but it really is a dilemma and there is not much

point asking parents of children who are only deaf as our decision would be

infinitely easier if we were in that boat.

has fairly OK basic receptive language but no expressive as yet. We

do not expect her to be " cured " of her deafness by a CI if she has one but

if she learns to sign and can at least hear some, she has a connection with

the world even if her speach does not develop as such. Oh good grief, this

whole subject is so emotive and just about ten thousand thoughts run through

my head every time I approach it. Guess this is the time to really research

it and ask lots of questions throughout the assessment. All suggestions

most appreciated.

By the way, what does the assessment entail?

Thanks in advance.......

Flo

[Guest guest]

Speaking of cochlear implants, we met with the audiologist today and learnt

the results of the MRI had ages ago. We had not chased them up as

we have been really reluctant to pursue the whole CI thing as it felt like

it was a very major elective surgery with no cetainty of success, risk of

facial nerve damage, yet more GAs etc etc etc. It would appear that she

does have the auditory nerve (8th cranial?), possibly on both sides. We

have agreed to go through the assessment for the CI with the audiologist

being aware that we are really ambivalent about the whole thing. The

tempting point is the fact that only has vision in one eye and there

is the perpetual fear of her losing it and her communication options being

even more limited (she has bilateral colobomas). Has anyone gone through

this whole dilemma (silly question I know) compounded by the deafblindness?

If so, what made you dicide which way to go? It is really early days to be

worrying about this when she may or may not be found to be suitable for the

implant but it is never too early to start thinking about these things and

we do not want to remain totally anti if it is likely to benefit her

significantly and improve her quality of life. I know I have probably asked

these questions before but it really is a dilemma and there is not much

point asking parents of children who are only deaf as our decision would be

infinitely easier if we were in that boat.

has fairly OK basic receptive language but no expressive as yet. We

do not expect her to be " cured " of her deafness by a CI if she has one but

if she learns to sign and can at least hear some, she has a connection with

the world even if her speach does not develop as such. Oh good grief, this

whole subject is so emotive and just about ten thousand thoughts run through

my head every time I approach it. Guess this is the time to really research

it and ask lots of questions throughout the assessment. All suggestions

most appreciated.

By the way, what does the assessment entail?

Thanks in advance.......

Flo

[Guest guest]

,

Now,we use cued speech with Bryce and I absolutely love it. We signed for the

first 2 1/2 years but he was in the hospital about half of that time and so

sick when he was at home that he really didn't learn much. Then when he got his

implant at 2 3/4, we stopped signing and switched to auditory verbal. This

was very frustrating for us because the implant wasn't working. The whole team

was so sure that we could fix the implant problem, that we kept on with this

method. 15 months later we switched to cued speech and he took off. He gained 3

1/2 years of receptive language in the first year. We chose cuiing over

signing for three reasons. Cued speech teaches them English so English is their

first language and cuing kids read and write on the same level with their

hearing

peers. (Bryce just fininshed Kindergarden and he is reading even though he

has only had any language at all for 3 years! We are so excited about this!) The

second reason we chose cuing is that it is consistent with the auditory

verbal training. So that when Bryce started hearing this year (21/2 years after

we

started cuing), he already knew a lot of English language so that now if he

can process speech, it's the same language. (ASL is a different language.)

Thirdly, cued speech teaches kids to be very good lip readers which was a skill

I

wanted Bryce to have.

I think I'm the only parent on this listserve that uses cued speech

but it has definitely been the right choice for us for now. If Bryce doesn't

ever develop intelligible speech, we may teach him to sign later on. That will

be

his choice.

It's a complicated decision with CHARGE kids because you have to weigh

so many factors before deciding what is best for your child.

Good Luck,

Deedee

[Guest guest]

,

Now,we use cued speech with Bryce and I absolutely love it. We signed for the

first 2 1/2 years but he was in the hospital about half of that time and so

sick when he was at home that he really didn't learn much. Then when he got his

implant at 2 3/4, we stopped signing and switched to auditory verbal. This

was very frustrating for us because the implant wasn't working. The whole team

was so sure that we could fix the implant problem, that we kept on with this

method. 15 months later we switched to cued speech and he took off. He gained 3

1/2 years of receptive language in the first year. We chose cuiing over

signing for three reasons. Cued speech teaches them English so English is their

first language and cuing kids read and write on the same level with their

hearing

peers. (Bryce just fininshed Kindergarden and he is reading even though he

has only had any language at all for 3 years! We are so excited about this!) The

second reason we chose cuing is that it is consistent with the auditory

verbal training. So that when Bryce started hearing this year (21/2 years after

we

started cuing), he already knew a lot of English language so that now if he

can process speech, it's the same language. (ASL is a different language.)

Thirdly, cued speech teaches kids to be very good lip readers which was a skill

I

wanted Bryce to have.

I think I'm the only parent on this listserve that uses cued speech

but it has definitely been the right choice for us for now. If Bryce doesn't

ever develop intelligible speech, we may teach him to sign later on. That will

be

his choice.

It's a complicated decision with CHARGE kids because you have to weigh

so many factors before deciding what is best for your child.

Good Luck,

Deedee

[Guest guest]

,

Now,we use cued speech with Bryce and I absolutely love it. We signed for the

first 2 1/2 years but he was in the hospital about half of that time and so

sick when he was at home that he really didn't learn much. Then when he got his

implant at 2 3/4, we stopped signing and switched to auditory verbal. This

was very frustrating for us because the implant wasn't working. The whole team

was so sure that we could fix the implant problem, that we kept on with this

method. 15 months later we switched to cued speech and he took off. He gained 3

1/2 years of receptive language in the first year. We chose cuiing over

signing for three reasons. Cued speech teaches them English so English is their

first language and cuing kids read and write on the same level with their

hearing

peers. (Bryce just fininshed Kindergarden and he is reading even though he

has only had any language at all for 3 years! We are so excited about this!) The

second reason we chose cuing is that it is consistent with the auditory

verbal training. So that when Bryce started hearing this year (21/2 years after

we

started cuing), he already knew a lot of English language so that now if he

can process speech, it's the same language. (ASL is a different language.)

Thirdly, cued speech teaches kids to be very good lip readers which was a skill

I

wanted Bryce to have.

I think I'm the only parent on this listserve that uses cued speech

but it has definitely been the right choice for us for now. If Bryce doesn't

ever develop intelligible speech, we may teach him to sign later on. That will

be

his choice.

It's a complicated decision with CHARGE kids because you have to weigh

so many factors before deciding what is best for your child.

Good Luck,

Deedee

[Guest guest]

erika is almost 9, we just recently have become aware that she is deafblind.

we knew she had serious hearing problems and eye problems, however didnt

realize they went to goether and had a label. erika got a BAHA implant instead

of a cochealr as they feel the nerve is not damaged. she has significat

visual problems, bilaterl colombomas, angle closure glaucoma, having a lens

removed and is on drops witht he pressures continue to rise, so a lensectomy

may

have to happen.

anyway, commuicaiton is a real issue. we are now working with an

educaitonal consultant with the New York State Assistance Project for Deafblind

children. it has been our answer. i beleive every state has this. He has

really

helped us figure out where to go and how to start better devloping erikas

education needs. we are changing schools, adding a teacher of the deaf along

with erikas vision,pt, ot and st srevices. my distrcit is creting a program

for

her.

this hopes to be a productive year in thea erikas BAHA was just turned on in

January. it has been 6 mos of much, much testing, evaluating, i feel like a

yoo yoo.

it has been extremely furstrating, however, i feel we are finally on the

right trach.

good luck and feel free to conact me if you have any thing i can help yoiu

with

cathie, mom to erika

[Guest guest]

erika is almost 9, we just recently have become aware that she is deafblind.

we knew she had serious hearing problems and eye problems, however didnt

realize they went to goether and had a label. erika got a BAHA implant instead

of a cochealr as they feel the nerve is not damaged. she has significat

visual problems, bilaterl colombomas, angle closure glaucoma, having a lens

removed and is on drops witht he pressures continue to rise, so a lensectomy

may

have to happen.

anyway, commuicaiton is a real issue. we are now working with an

educaitonal consultant with the New York State Assistance Project for Deafblind

children. it has been our answer. i beleive every state has this. He has

really

helped us figure out where to go and how to start better devloping erikas

education needs. we are changing schools, adding a teacher of the deaf along

with erikas vision,pt, ot and st srevices. my distrcit is creting a program

for

her.

this hopes to be a productive year in thea erikas BAHA was just turned on in

January. it has been 6 mos of much, much testing, evaluating, i feel like a

yoo yoo.

it has been extremely furstrating, however, i feel we are finally on the

right trach.

good luck and feel free to conact me if you have any thing i can help yoiu

with

cathie, mom to erika

[Guest guest]

erika is almost 9, we just recently have become aware that she is deafblind.

we knew she had serious hearing problems and eye problems, however didnt

realize they went to goether and had a label. erika got a BAHA implant instead

of a cochealr as they feel the nerve is not damaged. she has significat

visual problems, bilaterl colombomas, angle closure glaucoma, having a lens

removed and is on drops witht he pressures continue to rise, so a lensectomy

may

have to happen.

anyway, commuicaiton is a real issue. we are now working with an

educaitonal consultant with the New York State Assistance Project for Deafblind

children. it has been our answer. i beleive every state has this. He has

really

helped us figure out where to go and how to start better devloping erikas

education needs. we are changing schools, adding a teacher of the deaf along

with erikas vision,pt, ot and st srevices. my distrcit is creting a program

for

her.

this hopes to be a productive year in thea erikas BAHA was just turned on in

January. it has been 6 mos of much, much testing, evaluating, i feel like a

yoo yoo.

it has been extremely furstrating, however, i feel we are finally on the

right trach.

good luck and feel free to conact me if you have any thing i can help yoiu

with

cathie, mom to erika

[Guest guest]

Flo,

also has bilateral colobomas, the one in her left eye is in the field

of vision. So she has very limited eyesight in that eye and is nearsighted

in the other. Our ENT never expressed any concern about a chance of the CI

operation destroying her vision. I think the biggest chance of this would be

if the ENT hit the facial nerve when operating--the facial nerve in CHARGE

kids sometimes runs very close to the auditory nerve. To prevent this--and as

part of the assessment--your ENT will probably suggest a CT scan so he can see

the placement of her auditory and facial nerves. Then he'll be able to tell

you how high the risk would be of possibly hitting that facial nerve in the

surgery.

The CI assessment also involves meeting with several other specialists. We

met with an aural rehab specialist to determine how much use might get

out of the implant; a developmental pediatrician to determine her current

developmental levels; a psychologist to determine how committed we were to the

implant and to the necessary therapies and training to allow her to get the

most from it; among others. That was a big part of the CI assessment, as least

at our children's hospital--that the parents be 100% committed to the

surgery and to the follow-up. I know that makes it an even harder choice for

you,

so I'd advise you to take your time and get all the info you can before

making the decision.

Good luck!

K of OH. Mother to , 2 1/2 (CHARGE) and wife to Arlin.

[Guest guest]

Flo,

also has bilateral colobomas, the one in her left eye is in the field

of vision. So she has very limited eyesight in that eye and is nearsighted

in the other. Our ENT never expressed any concern about a chance of the CI

operation destroying her vision. I think the biggest chance of this would be

if the ENT hit the facial nerve when operating--the facial nerve in CHARGE

kids sometimes runs very close to the auditory nerve. To prevent this--and as

part of the assessment--your ENT will probably suggest a CT scan so he can see

the placement of her auditory and facial nerves. Then he'll be able to tell

you how high the risk would be of possibly hitting that facial nerve in the

surgery.

The CI assessment also involves meeting with several other specialists. We

met with an aural rehab specialist to determine how much use might get

out of the implant; a developmental pediatrician to determine her current

developmental levels; a psychologist to determine how committed we were to the

implant and to the necessary therapies and training to allow her to get the

most from it; among others. That was a big part of the CI assessment, as least

at our children's hospital--that the parents be 100% committed to the

surgery and to the follow-up. I know that makes it an even harder choice for

you,

so I'd advise you to take your time and get all the info you can before

making the decision.

Good luck!

K of OH. Mother to , 2 1/2 (CHARGE) and wife to Arlin.

[Guest guest]

Flo,

also has bilateral colobomas, the one in her left eye is in the field

of vision. So she has very limited eyesight in that eye and is nearsighted

in the other. Our ENT never expressed any concern about a chance of the CI

operation destroying her vision. I think the biggest chance of this would be

if the ENT hit the facial nerve when operating--the facial nerve in CHARGE

kids sometimes runs very close to the auditory nerve. To prevent this--and as

part of the assessment--your ENT will probably suggest a CT scan so he can see

the placement of her auditory and facial nerves. Then he'll be able to tell

you how high the risk would be of possibly hitting that facial nerve in the

surgery.

The CI assessment also involves meeting with several other specialists. We

met with an aural rehab specialist to determine how much use might get

out of the implant; a developmental pediatrician to determine her current

developmental levels; a psychologist to determine how committed we were to the

implant and to the necessary therapies and training to allow her to get the

most from it; among others. That was a big part of the CI assessment, as least

at our children's hospital--that the parents be 100% committed to the

surgery and to the follow-up. I know that makes it an even harder choice for

you,

so I'd advise you to take your time and get all the info you can before

making the decision.

Good luck!

K of OH. Mother to , 2 1/2 (CHARGE) and wife to Arlin.

[Guest guest]

Deedee,

Thanks for the info on cued speech. We had looked at this alternative quite

a while ago, when first had hearing aids but not her implant yet, but

haven't gone back to look at it again. It might be a good idea for us to

look into that again as an option. Thanks for the suggestion!

K of OH. Mother to , 2 1/2 (CHARGE) and wife to Arlin.