Re: Hearing loss (mis)diagnosis

[Guest guest]

rita acutlay just had another hearing test toda hearing has gone down now

isnt that funny coz we are on the subject of this stuff but my loss is well

sensory neural butit the bone conductor works best for me so its also in

the other area to if that make sence i take antiboitics for vaious staph and

blood type bacterimias which ive ahd and that coursed ti to go down and also

one toerh thing which i didtn think of but i also had a salt inblance which

made it go down to dont knwo wat is doing ti this time ive got a lot of

fluid on the ear drum and we are hoping that that is the case hm i will

update you all on that oen when we see ent hug sellen

>

> ,

>

> Can I ask what type of allergy meds does Aubrie take and how old was she

> when she started taking them?

> (Also, did she ever have her adnoids removed? or have they ever posed any

> problems for her. Apologies

> if this was in an earlier post and I missed it)

>

> (PS-I love the picture of Aubrie in her karate outfit belt!)

>

>

> (mom to 23months CHARGE, 5.5 years, wife to Pat)

> New York

>

> RE: Hearing loss (mis)diagnosis

>

>

> > Bonnie-

> > Does Patty take allergy meds this time of year? We are finding that

> > Aubrie

> > needs it or she gets very congested with sinus and ear infections

> > following.

> > Just wondering. If/when you try the bone conduction and/or baha, be

> sure

> > to

> > let us know how it goes.

> >

> > Michele W

> > mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

> >

> >

> >

> >

> >

> > CHARGE SYNDROME LISTSERV PHOTO PAGE:

> > http://www.imagestation.com/album/?id=2117043995

> >

> > Membership of this email support group does not constitute membership in

> > the CHARGE Syndrome Foundation; for information about the CHARGE

> Syndrome

> > Foundation or to become a member (and get the newsletter),

> > please contact marion@... or visit

> > the web site at http://www.chargesyndrome.org

> >

> > 8th International

> > CHARGE Syndrome Conference, July, 2007. Information will be available at

> > www.chargesyndrome.org or by calling 1-.

> >

[Guest guest]

rita acutlay just had another hearing test toda hearing has gone down now

isnt that funny coz we are on the subject of this stuff but my loss is well

sensory neural butit the bone conductor works best for me so its also in

the other area to if that make sence i take antiboitics for vaious staph and

blood type bacterimias which ive ahd and that coursed ti to go down and also

one toerh thing which i didtn think of but i also had a salt inblance which

made it go down to dont knwo wat is doing ti this time ive got a lot of

fluid on the ear drum and we are hoping that that is the case hm i will

update you all on that oen when we see ent hug sellen

>

> ,

>

> Can I ask what type of allergy meds does Aubrie take and how old was she

> when she started taking them?

> (Also, did she ever have her adnoids removed? or have they ever posed any

> problems for her. Apologies

> if this was in an earlier post and I missed it)

>

> (PS-I love the picture of Aubrie in her karate outfit belt!)

>

>

> (mom to 23months CHARGE, 5.5 years, wife to Pat)

> New York

>

> RE: Hearing loss (mis)diagnosis

>

>

> > Bonnie-

> > Does Patty take allergy meds this time of year? We are finding that

> > Aubrie

> > needs it or she gets very congested with sinus and ear infections

> > following.

> > Just wondering. If/when you try the bone conduction and/or baha, be

> sure

> > to

> > let us know how it goes.

> >

> > Michele W

> > mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

> >

> >

> >

> >

> >

> > CHARGE SYNDROME LISTSERV PHOTO PAGE:

> > http://www.imagestation.com/album/?id=2117043995

> >

> > Membership of this email support group does not constitute membership in

> > the CHARGE Syndrome Foundation; for information about the CHARGE

> Syndrome

> > Foundation or to become a member (and get the newsletter),

> > please contact marion@... or visit

> > the web site at http://www.chargesyndrome.org

> >

> > 8th International

> > CHARGE Syndrome Conference, July, 2007. Information will be available at

> > www.chargesyndrome.org or by calling 1-.

> >

[Guest guest]

rita acutlay just had another hearing test toda hearing has gone down now

isnt that funny coz we are on the subject of this stuff but my loss is well

sensory neural butit the bone conductor works best for me so its also in

the other area to if that make sence i take antiboitics for vaious staph and

blood type bacterimias which ive ahd and that coursed ti to go down and also

one toerh thing which i didtn think of but i also had a salt inblance which

made it go down to dont knwo wat is doing ti this time ive got a lot of

fluid on the ear drum and we are hoping that that is the case hm i will

update you all on that oen when we see ent hug sellen

>

> ,

>

> Can I ask what type of allergy meds does Aubrie take and how old was she

> when she started taking them?

> (Also, did she ever have her adnoids removed? or have they ever posed any

> problems for her. Apologies

> if this was in an earlier post and I missed it)

>

> (PS-I love the picture of Aubrie in her karate outfit belt!)

>

>

> (mom to 23months CHARGE, 5.5 years, wife to Pat)

> New York

>

> RE: Hearing loss (mis)diagnosis

>

>

> > Bonnie-

> > Does Patty take allergy meds this time of year? We are finding that

> > Aubrie

> > needs it or she gets very congested with sinus and ear infections

> > following.

> > Just wondering. If/when you try the bone conduction and/or baha, be

> sure

> > to

> > let us know how it goes.

> >

> > Michele W

> > mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

> >

> >

> >

> >

> >

> > CHARGE SYNDROME LISTSERV PHOTO PAGE:

> > http://www.imagestation.com/album/?id=2117043995

> >

> > Membership of this email support group does not constitute membership in

> > the CHARGE Syndrome Foundation; for information about the CHARGE

> Syndrome

> > Foundation or to become a member (and get the newsletter),

> > please contact marion@... or visit

> > the web site at http://www.chargesyndrome.org

> >

> > 8th International

> > CHARGE Syndrome Conference, July, 2007. Information will be available at

> > www.chargesyndrome.org or by calling 1-.

> >

[Guest guest]

Hi everyone

Reading up on the ears etc..Amelie is about to have another test,

this time at home on Thursday...we still to her 15 months have no

hearing aids of any kind in place..so the ears frustrate me, i hope

this week they make a decision to do something, especially as most

children have some form of aid.

lesley x

>

> Bonnie-

> Does Patty take allergy meds this time of year? We are finding

that Aubrie

> needs it or she gets very congested with sinus and ear infections

following.

> Just wondering. If/when you try the bone conduction and/or baha,

be sure to

> let us know how it goes.

>

> Michele W

> mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

>

[Guest guest]

Hi everyone

Reading up on the ears etc..Amelie is about to have another test,

this time at home on Thursday...we still to her 15 months have no

hearing aids of any kind in place..so the ears frustrate me, i hope

this week they make a decision to do something, especially as most

children have some form of aid.

lesley x

>

> Bonnie-

> Does Patty take allergy meds this time of year? We are finding

that Aubrie

> needs it or she gets very congested with sinus and ear infections

following.

> Just wondering. If/when you try the bone conduction and/or baha,

be sure to

> let us know how it goes.

>

> Michele W

> mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

>

[Guest guest]

Hi everyone

Reading up on the ears etc..Amelie is about to have another test,

this time at home on Thursday...we still to her 15 months have no

hearing aids of any kind in place..so the ears frustrate me, i hope

this week they make a decision to do something, especially as most

children have some form of aid.

lesley x

>

> Bonnie-

> Does Patty take allergy meds this time of year? We are finding

that Aubrie

> needs it or she gets very congested with sinus and ear infections

following.

> Just wondering. If/when you try the bone conduction and/or baha,

be sure to

> let us know how it goes.

>

> Michele W

> mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

>

[Guest guest]

hope thsi test goes wel for you and her hmmmmm mum will be making ent appt

soon just another thing to think about and ive got the hearing centre again

in may hugs and i wont say how long uve been home les for fear itll jinx her

but i want to say yay but i wont for it could and dont want to jinx it LOL

love you

>

> Hi everyone

>

> Reading up on the ears etc..Amelie is about to have another test,

> this time at home on Thursday...we still to her 15 months have no

> hearing aids of any kind in place..so the ears frustrate me, i hope

> this week they make a decision to do something, especially as most

> children have some form of aid.

>

> lesley x

>

>

>

>

>

>

> >

> > Bonnie-

> > Does Patty take allergy meds this time of year? We are finding

> that Aubrie

> > needs it or she gets very congested with sinus and ear infections

> following.

> > Just wondering. If/when you try the bone conduction and/or baha,

> be sure to

> > let us know how it goes.

> >

> > Michele W

> > mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

> >

>

>

>

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> Membership of this email support group does not constitute membership in

> the CHARGE Syndrome Foundation; for information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org

>

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

hope thsi test goes wel for you and her hmmmmm mum will be making ent appt

soon just another thing to think about and ive got the hearing centre again

in may hugs and i wont say how long uve been home les for fear itll jinx her

but i want to say yay but i wont for it could and dont want to jinx it LOL

love you

>

> Hi everyone

>

> Reading up on the ears etc..Amelie is about to have another test,

> this time at home on Thursday...we still to her 15 months have no

> hearing aids of any kind in place..so the ears frustrate me, i hope

> this week they make a decision to do something, especially as most

> children have some form of aid.

>

> lesley x

>

>

>

>

>

>

> >

> > Bonnie-

> > Does Patty take allergy meds this time of year? We are finding

> that Aubrie

> > needs it or she gets very congested with sinus and ear infections

> following.

> > Just wondering. If/when you try the bone conduction and/or baha,

> be sure to

> > let us know how it goes.

> >

> > Michele W

> > mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

> >

>

>

>

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> Membership of this email support group does not constitute membership in

> the CHARGE Syndrome Foundation; for information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org

>

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

hope thsi test goes wel for you and her hmmmmm mum will be making ent appt

soon just another thing to think about and ive got the hearing centre again

in may hugs and i wont say how long uve been home les for fear itll jinx her

but i want to say yay but i wont for it could and dont want to jinx it LOL

love you

>

> Hi everyone

>

> Reading up on the ears etc..Amelie is about to have another test,

> this time at home on Thursday...we still to her 15 months have no

> hearing aids of any kind in place..so the ears frustrate me, i hope

> this week they make a decision to do something, especially as most

> children have some form of aid.

>

> lesley x

>

>

>

>

>

>

> >

> > Bonnie-

> > Does Patty take allergy meds this time of year? We are finding

> that Aubrie

> > needs it or she gets very congested with sinus and ear infections

> following.

> > Just wondering. If/when you try the bone conduction and/or baha,

> be sure to

> > let us know how it goes.

> >

> > Michele W

> > mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

> >

>

>

>

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> Membership of this email support group does not constitute membership in

> the CHARGE Syndrome Foundation; for information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org

>

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

Lesley,

I know exactly how you feel. was so sick and in and out of the hospital

the first 2 yrs. and we could not get an accurate hearing test done. They

finally got the testing finished just after she turned 2 and we were able to get

her hearing aids when she was 2 1/2 yrs old. It was frustrating to us as well,

but she has done wonderful. She is learning fast and trying hard to catch up. I

know Amelie will do the same -- she is a fighter. Hang in there. You are doing a

great job.

Mom to 3 yrs. CHARGE

---------------------------------

Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates

starting at 1 & cent;/min.

[Guest guest]

Ellen, dare WE say it 2 whole weeks!!!!!!!!!!!!!isnt she doing well,

although we are vigorously doing chest physio round the clock to

keep the sticky green stuff at bay!! decisions soon just waiting for

all the consultants to get back from easter hols and then we should

no what we are doing next!!

love you too, keep posting i enjoy reading your observations, from

someone who knows best!

love les x

> > >

> > > Bonnie-

> > > Does Patty take allergy meds this time of year? We are finding

> > that Aubrie

> > > needs it or she gets very congested with sinus and ear

infections

> > following.

> > > Just wondering. If/when you try the bone conduction and/or

baha,

> > be sure to

> > > let us know how it goes.

> > >

> > > Michele W

> > > mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

> > >

> >

> >

> >

> >

> >

> >

> >

> > CHARGE SYNDROME LISTSERV PHOTO PAGE:

> > http://www.imagestation.com/album/?id=2117043995

> >

> > Membership of this email support group does not constitute

membership in

> > the CHARGE Syndrome Foundation; for information about the CHARGE

Syndrome

> > Foundation or to become a member (and get the newsletter),

> > please contact marion@... or visit

> > the web site at http://www.chargesyndrome.org

> >

> > 8th International

> > CHARGE Syndrome Conference, July, 2007. Information will be

available at

> > www.chargesyndrome.org or by calling 1-.

> >

[Guest guest]

Ellen, dare WE say it 2 whole weeks!!!!!!!!!!!!!isnt she doing well,

although we are vigorously doing chest physio round the clock to

keep the sticky green stuff at bay!! decisions soon just waiting for

all the consultants to get back from easter hols and then we should

no what we are doing next!!

love you too, keep posting i enjoy reading your observations, from

someone who knows best!

love les x

> > >

> > > Bonnie-

> > > Does Patty take allergy meds this time of year? We are finding

> > that Aubrie

> > > needs it or she gets very congested with sinus and ear

infections

> > following.

> > > Just wondering. If/when you try the bone conduction and/or

baha,

> > be sure to

> > > let us know how it goes.

> > >

> > > Michele W

> > > mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

> > >

> >

> >

> >

> >

> >

> >

> >

> > CHARGE SYNDROME LISTSERV PHOTO PAGE:

> > http://www.imagestation.com/album/?id=2117043995

> >

> > Membership of this email support group does not constitute

membership in

> > the CHARGE Syndrome Foundation; for information about the CHARGE

Syndrome

> > Foundation or to become a member (and get the newsletter),

> > please contact marion@... or visit

> > the web site at http://www.chargesyndrome.org

> >

> > 8th International

> > CHARGE Syndrome Conference, July, 2007. Information will be

available at

> > www.chargesyndrome.org or by calling 1-.

> >

[Guest guest]

Ellen, dare WE say it 2 whole weeks!!!!!!!!!!!!!isnt she doing well,

although we are vigorously doing chest physio round the clock to

keep the sticky green stuff at bay!! decisions soon just waiting for

all the consultants to get back from easter hols and then we should

no what we are doing next!!

love you too, keep posting i enjoy reading your observations, from

someone who knows best!

love les x

> > >

> > > Bonnie-

> > > Does Patty take allergy meds this time of year? We are finding

> > that Aubrie

> > > needs it or she gets very congested with sinus and ear

infections

> > following.

> > > Just wondering. If/when you try the bone conduction and/or

baha,

> > be sure to

> > > let us know how it goes.

> > >

> > > Michele W

> > > mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

> > >

> >

> >

> >

> >

> >

> >

> >

> > CHARGE SYNDROME LISTSERV PHOTO PAGE:

> > http://www.imagestation.com/album/?id=2117043995

> >

> > Membership of this email support group does not constitute

membership in

> > the CHARGE Syndrome Foundation; for information about the CHARGE

Syndrome

> > Foundation or to become a member (and get the newsletter),

> > please contact marion@... or visit

> > the web site at http://www.chargesyndrome.org

> >

> > 8th International

> > CHARGE Syndrome Conference, July, 2007. Information will be

available at

> > www.chargesyndrome.org or by calling 1-.

> >

[Guest guest]

, your story of s ears brings calm to my state of mind,

i keep on panicking, and then when i hear someone else has been in

the same boat, yet progressed despite no aids it keeps me going that

bit longer.

thank you les x

>

> Lesley,

>

> I know exactly how you feel. was so sick and in and out

of the hospital the first 2 yrs. and we could not get an accurate

hearing test done. They finally got the testing finished just after

she turned 2 and we were able to get her hearing aids when she was 2

1/2 yrs old. It was frustrating to us as well, but she has done

wonderful. She is learning fast and trying hard to catch up. I know

Amelie will do the same -- she is a fighter. Hang in there. You are

doing a great job.

>

>

> Mom to 3 yrs. CHARGE

>

>

>

>

>

> ---------------------------------

> Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls.

Great rates starting at 1 & cent;/min.

>

>

[Guest guest]

, your story of s ears brings calm to my state of mind,

i keep on panicking, and then when i hear someone else has been in

the same boat, yet progressed despite no aids it keeps me going that

bit longer.

thank you les x

>

> Lesley,

>

> I know exactly how you feel. was so sick and in and out

of the hospital the first 2 yrs. and we could not get an accurate

hearing test done. They finally got the testing finished just after

she turned 2 and we were able to get her hearing aids when she was 2

1/2 yrs old. It was frustrating to us as well, but she has done

wonderful. She is learning fast and trying hard to catch up. I know

Amelie will do the same -- she is a fighter. Hang in there. You are

doing a great job.

>

>

> Mom to 3 yrs. CHARGE

>

>

>

>

>

> ---------------------------------

> Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls.

Great rates starting at 1 & cent;/min.

>

>

[Guest guest]

, your story of s ears brings calm to my state of mind,

i keep on panicking, and then when i hear someone else has been in

the same boat, yet progressed despite no aids it keeps me going that

bit longer.

thank you les x

>

> Lesley,

>

> I know exactly how you feel. was so sick and in and out

of the hospital the first 2 yrs. and we could not get an accurate

hearing test done. They finally got the testing finished just after

she turned 2 and we were able to get her hearing aids when she was 2

1/2 yrs old. It was frustrating to us as well, but she has done

wonderful. She is learning fast and trying hard to catch up. I know

Amelie will do the same -- she is a fighter. Hang in there. You are

doing a great job.

>

>

> Mom to 3 yrs. CHARGE

>

>

>

>

>

> ---------------------------------

> Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls.

Great rates starting at 1 & cent;/min.

>

>

[Guest guest]

Lesley-

Remember that Aubrie didn't get her aids til age 3 yrs! She has severe loss

in one ear, mild-moderate in the other. One thing Judith Bluestone said at

the HANDLE training is that there are no " critical " developmental periods.

Rather they are " optimal " . It's not that you won't ever get the skill if it

doesn't come at the " right " time, it just will come easier and more

eloquently if you do. At a later time, it may take longer or be less

strong. Does that make sense? So you know you want to get it going as soon

as possible. But you also know that asap doesn't mean right now given all

the other life-threatening stuff you are managing. It'll be ok.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

[Guest guest]

Lesley-

Remember that Aubrie didn't get her aids til age 3 yrs! She has severe loss

in one ear, mild-moderate in the other. One thing Judith Bluestone said at

the HANDLE training is that there are no " critical " developmental periods.

Rather they are " optimal " . It's not that you won't ever get the skill if it

doesn't come at the " right " time, it just will come easier and more

eloquently if you do. At a later time, it may take longer or be less

strong. Does that make sense? So you know you want to get it going as soon

as possible. But you also know that asap doesn't mean right now given all

the other life-threatening stuff you are managing. It'll be ok.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

[Guest guest]

Michele,

thanks and very reassuring, i do forget other children have been

late, and sometimes I start to panic about the little things....

a funny story, when Amelie was 10 days old on a vent critically ill,

and no one knew what was wrong with her, the consultant came that

morning on the round, she said did i have any questions...yes i

replied of course i have..

'did you know Amelie is on three types of antibiotic and they have

taken 6 xrays in the last 48 hours' she looked at me blankly and

said 'yes' well i replied 'my worry is that all this antibiotic will

ruin her secondary dentition (teeth) and what about having children

they must be frying her ovaries'!!!!!! she looked at me and very

kindly replied ' i understand your anxieties, but our priority at

the moment is keeping her alive'!!!!!! i felt so silly, and each

ward round after this for weeks said very little when asked if i had

any questions!! moral of my CHAN story is i always worry about the

little things!!!!!!

thanks again Lesley x

>

> Lesley-

> Remember that Aubrie didn't get her aids til age 3 yrs! She has

severe loss

> in one ear, mild-moderate in the other. One thing Judith

Bluestone said at

> the HANDLE training is that there are no " critical " developmental

periods.

> Rather they are " optimal " . It's not that you won't ever get the

skill if it

> doesn't come at the " right " time, it just will come easier and more

> eloquently if you do. At a later time, it may take longer or be

less

> strong. Does that make sense? So you know you want to get it

going as soon

> as possible. But you also know that asap doesn't mean right now

given all

> the other life-threatening stuff you are managing. It'll be ok.

>

> Michele W

> mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

>

[Guest guest]

Michele,

thanks and very reassuring, i do forget other children have been

late, and sometimes I start to panic about the little things....

a funny story, when Amelie was 10 days old on a vent critically ill,

and no one knew what was wrong with her, the consultant came that

morning on the round, she said did i have any questions...yes i

replied of course i have..

'did you know Amelie is on three types of antibiotic and they have

taken 6 xrays in the last 48 hours' she looked at me blankly and

said 'yes' well i replied 'my worry is that all this antibiotic will

ruin her secondary dentition (teeth) and what about having children

they must be frying her ovaries'!!!!!! she looked at me and very

kindly replied ' i understand your anxieties, but our priority at

the moment is keeping her alive'!!!!!! i felt so silly, and each

ward round after this for weeks said very little when asked if i had

any questions!! moral of my CHAN story is i always worry about the

little things!!!!!!

thanks again Lesley x

>

> Lesley-

> Remember that Aubrie didn't get her aids til age 3 yrs! She has

severe loss

> in one ear, mild-moderate in the other. One thing Judith

Bluestone said at

> the HANDLE training is that there are no " critical " developmental

periods.

> Rather they are " optimal " . It's not that you won't ever get the

skill if it

> doesn't come at the " right " time, it just will come easier and more

> eloquently if you do. At a later time, it may take longer or be

less

> strong. Does that make sense? So you know you want to get it

going as soon

> as possible. But you also know that asap doesn't mean right now

given all

> the other life-threatening stuff you are managing. It'll be ok.

>

> Michele W

> mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

>

[Guest guest]

Lesley-

I, too, worry about all the meds, xrays, etc. But there truly is nothing we

can do but minimize what we can and deal with the rest. The woman I work

with has a 2 year old who is on daily steroids already. She has a chronic

condition that requires the steroids, but there are so many side effects!

What a difficult dilemma to know that what you must do to keep a child alive

is actually harming them in some way. In her case, it's sort of a big harm.

In our case, it's usually a little harm.

The " mommy guilt " is so much bigger in CHARGEland than with other kids!

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

[Guest guest]

Lesley-

I, too, worry about all the meds, xrays, etc. But there truly is nothing we

can do but minimize what we can and deal with the rest. The woman I work

with has a 2 year old who is on daily steroids already. She has a chronic

condition that requires the steroids, but there are so many side effects!

What a difficult dilemma to know that what you must do to keep a child alive

is actually harming them in some way. In her case, it's sort of a big harm.

In our case, it's usually a little harm.

The " mommy guilt " is so much bigger in CHARGEland than with other kids!

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

[Guest guest]

Lesley,

You make me laugh, but only from the point of view of understanding exactly

what you are saying and why you asked those questions. The " silly " things

we worry about! But hey, someone has to think of the little things. Let

the medics think of the big things. At least it shows we are thinking of

the whole picture, not just the here and now or the part in question.

I know CHARGE issues mean that we are all keen to get everything in place

s.a.p but don't forget that before universal infant hearing tests came into

being 4 years ago, a great number of deaf children were not diagnosed until

probably around age 3, yet if the aids worked, they did so a treat. Of

course it may be different with CHARGE but in view of Amelie's other big

issues, a little more patience (hmmmm, this from the woman who insisted on a

hearing test while had just undergone a lifesaving PDA ligation!

Hindsight is indeed perfect sight!).

Oh, by the way, how did you get on with the Social Services appeal for

respite hours?

Flo

>

> Michele,

>

> thanks and very reassuring, i do forget other children have been

> late, and sometimes I start to panic about the little things....

>

> a funny story, when Amelie was 10 days old on a vent critically ill,

> and no one knew what was wrong with her, the consultant came that

> morning on the round, she said did i have any questions...yes i

> replied of course i have..

>

> 'did you know Amelie is on three types of antibiotic and they have

> taken 6 xrays in the last 48 hours' she looked at me blankly and

> said 'yes' well i replied 'my worry is that all this antibiotic will

> ruin her secondary dentition (teeth) and what about having children

> they must be frying her ovaries'!!!!!! she looked at me and very

> kindly replied ' i understand your anxieties, but our priority at

> the moment is keeping her alive'!!!!!! i felt so silly, and each

> ward round after this for weeks said very little when asked if i had

> any questions!! moral of my CHAN story is i always worry about the

> little things!!!!!!

>

> thanks again Lesley x

>

>

>

>

> >

> > Lesley-

> > Remember that Aubrie didn't get her aids til age 3 yrs! She has

> severe loss

> > in one ear, mild-moderate in the other. One thing Judith

> Bluestone said at

> > the HANDLE training is that there are no " critical " developmental

> periods.

> > Rather they are " optimal " . It's not that you won't ever get the

> skill if it

> > doesn't come at the " right " time, it just will come easier and more

> > eloquently if you do. At a later time, it may take longer or be

> less

> > strong. Does that make sense? So you know you want to get it

> going as soon

> > as possible. But you also know that asap doesn't mean right now

> given all

> > the other life-threatening stuff you are managing. It'll be ok.

> >

> > Michele W

> > mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

> >

>

>

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> Membership of this email support group does not constitute membership in

> the CHARGE Syndrome Foundation; for information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org

>

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

Lesley,

You make me laugh, but only from the point of view of understanding exactly

what you are saying and why you asked those questions. The " silly " things

we worry about! But hey, someone has to think of the little things. Let

the medics think of the big things. At least it shows we are thinking of

the whole picture, not just the here and now or the part in question.

I know CHARGE issues mean that we are all keen to get everything in place

s.a.p but don't forget that before universal infant hearing tests came into

being 4 years ago, a great number of deaf children were not diagnosed until

probably around age 3, yet if the aids worked, they did so a treat. Of

course it may be different with CHARGE but in view of Amelie's other big

issues, a little more patience (hmmmm, this from the woman who insisted on a

hearing test while had just undergone a lifesaving PDA ligation!

Hindsight is indeed perfect sight!).

Oh, by the way, how did you get on with the Social Services appeal for

respite hours?

Flo

>

> Michele,

>

> thanks and very reassuring, i do forget other children have been

> late, and sometimes I start to panic about the little things....

>

> a funny story, when Amelie was 10 days old on a vent critically ill,

> and no one knew what was wrong with her, the consultant came that

> morning on the round, she said did i have any questions...yes i

> replied of course i have..

>

> 'did you know Amelie is on three types of antibiotic and they have

> taken 6 xrays in the last 48 hours' she looked at me blankly and

> said 'yes' well i replied 'my worry is that all this antibiotic will

> ruin her secondary dentition (teeth) and what about having children

> they must be frying her ovaries'!!!!!! she looked at me and very

> kindly replied ' i understand your anxieties, but our priority at

> the moment is keeping her alive'!!!!!! i felt so silly, and each

> ward round after this for weeks said very little when asked if i had

> any questions!! moral of my CHAN story is i always worry about the

> little things!!!!!!

>

> thanks again Lesley x

>

>

>

>

> >

> > Lesley-

> > Remember that Aubrie didn't get her aids til age 3 yrs! She has

> severe loss

> > in one ear, mild-moderate in the other. One thing Judith

> Bluestone said at

> > the HANDLE training is that there are no " critical " developmental

> periods.

> > Rather they are " optimal " . It's not that you won't ever get the

> skill if it

> > doesn't come at the " right " time, it just will come easier and more

> > eloquently if you do. At a later time, it may take longer or be

> less

> > strong. Does that make sense? So you know you want to get it

> going as soon

> > as possible. But you also know that asap doesn't mean right now

> given all

> > the other life-threatening stuff you are managing. It'll be ok.

> >

> > Michele W

> > mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

> >

>

>

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> Membership of this email support group does not constitute membership in

> the CHARGE Syndrome Foundation; for information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org

>

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>