RE: Grace created a consonant chain!!!

[Guest guest]

In a message dated 3/30/00 7:41:41 PM Pacific Standard Time, crain@...

writes:

<< Well! I'm ecstatic to say, Grace said her first " bababa " today! >>

BIG SMILE! Kimry

We have some questionable speech issues going on w/our 3 year old, so I know

how much hearing something, anything they say is music to your ears and just

speaks directly to your heart!

[Guest guest]

Congratulations

I'm happy for you and for Grace. May there be many more words to follow.

Judy

[Guest guest]

-

A side note regarding the hearing.....We have twin nieces who are now 5.

Many in our family had suspected hearing problems since the girls were

infants. Their ped and parents, kept saying everything was fine. Well they

finally had hearing tests at UofM at about 2.5 years and were found to have

profound hearing losses. One is hearing well now with hearing aids and the

other with Cochlear implants. Hearing tests can be done on infants and very

young children. Since the testing was so long ago, I do not remember all of

the details however the girls were put under and were tested to see if the

brain was responding to sounds (yes I know, very loose description). It

sounds like you are hearing what everyone waits for when concerned with

hearing loss (yeah!), however if you continue to feel like there may be a

problem, don't overlook testing at this early age.

Thanks for getting this discussion board organized. It has been a great

source of information and comfort to us in this last week. It's amazing to

think that one week ago, we had no idea about any of this, nor did we suspect

that we would ever need to do anything besides repositioning with our

daughter. We never knew that positional plag and helmet/band therapy existed?

Robyn Piper

[Guest guest]

Robyn

We never knew about plagio and helmet/banding too. Wish I still didn't!

Shame, shame on the American Academy of Pediatrics for not informing parents.

If you search on their website on head deformation you will find a study

which shows that they knew this was a side effect of back/side sleeping when

they made the recommendation in 1992. They have this recommendation in

effect for ten years and are encouraging studies (as they made no U.S.

studies before the recommendation). We are the U.S. guinea pigs. The " Back

to Sleep " pamphlet they gave me in the hospital actually says " no other

problems " were found with regard to back/side sleeping besides something

about spitting up.

In my lifetime I will never, never be able to forgive them for what they have

done to my baby.

Judy

[Guest guest]

What a happy day for you!

I'm sure there'll be much more to come.... *smile*

-

[Guest guest]

I think the hearing test Robyn referred to is a brain stem hearing test, and

yes they are sedated during the test. Kimry

[Guest guest]

...Maybe we should all write to Academy of Peds. I looked into it

also. I did not get far enough to determine who to e-mail. I also started

checking into AMA and medical schools so they can train these up and coming

peds. Belinda (Indiana)

[Guest guest]

Judy,

I am writing a letter to the Academy of Pediatrics on this very subject,

which I invite all parents to sign who so desire. I will post it to this

group in the next day or so.

----- Original Message -----

From: <rmissirian@...>

<Plagiocephalyonelist>

Sent: Thursday, March 30, 2000 10:39 PM

Subject: Re: Grace created a consonant chain!!!

> Robyn

>

> We never knew about plagio and helmet/banding too. Wish I still didn't!

>

> Shame, shame on the American Academy of Pediatrics for not informing

parents.

> If you search on their website on head deformation you will find a study

> which shows that they knew this was a side effect of back/side sleeping

when

> they made the recommendation in 1992. They have this recommendation in

> effect for ten years and are encouraging studies (as they made no U.S.

> studies before the recommendation). We are the U.S. guinea pigs. The

" Back

> to Sleep " pamphlet they gave me in the hospital actually says " no other

> problems " were found with regard to back/side sleeping besides something

> about spitting up.

>

> In my lifetime I will never, never be able to forgive them for what they

have

> done to my baby.

>

> Judy

>

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

> PERFORM CPR ON YOUR APR!

> Get a NextCard Visa, in 30 seconds! Get rates as low as

> 0.0% Intro or 9.9% Fixed APR and no hidden fees.

> Apply NOW!

> 1/2121/3/_/689409/_/954484774/

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

>

>

>

>

>

[Guest guest]

Oh !

You must be such a strong woman to keep your sanity thru all this!

Keep smilin'!

Kendra

Crain wrote:

You know, I've been so wrapped up in the rest

of Grace's maladies; I've not even

cracked a book about hearing tests. Thanks for the information.

I just keep

thinking, "One thing at a time, please!" She's been going

through respiratory

scares since birth, pneumonia, RSV, idiopathic CSF pressure increase

(just once,

but that's plenty!), gross motor skill delays, possible hearing

problem (???),

brief "staring" spells which are worrying people, and to top it

off -

Plagiocephaly, torticollis, ear infections, and all that other

good stuff that

comes with a kid with a crooked noggin'!

But, she remains the SMILIEST kid I know! Sweet as pecan pie

- and THAT'S

SWEET!

C.

-----Original Message-----

From: Plagiocephalyonelist

Sent: Friday, March 31, 2000 1:08 PM

Plagiocephalyonelist

Subject: Re: Grace created a consonant chain!!!

I think the hearing test Robyn referred to is a brain stem hearing

test, and

yes they are sedated during the test. Kimry

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[Guest guest]

You know, I've been so wrapped up in the rest of Grace's maladies; I've not even

cracked a book about hearing tests. Thanks for the information. I just keep

thinking, " One thing at a time, please! " She's been going through respiratory

scares since birth, pneumonia, RSV, idiopathic CSF pressure increase (just once,

but that's plenty!), gross motor skill delays, possible hearing problem (???),

brief " staring " spells which are worrying people, and to top it off -

Plagiocephaly, torticollis, ear infections, and all that other good stuff that

comes with a kid with a crooked noggin'!

But, she remains the SMILIEST kid I know! Sweet as pecan pie - and THAT'S

SWEET!

C.

-----Original Message-----

From: Plagiocephalyonelist

Sent: Friday, March 31, 2000 1:08 PM

Plagiocephalyonelist

Subject: Re: Grace created a consonant chain!!!

I think the hearing test Robyn referred to is a brain stem hearing test, and

yes they are sedated during the test. Kimry

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

Get a NextCard Visa, in 30 seconds!

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2. Receive approval decision within 30 seconds

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Apply NOW!

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[Guest guest]

Yes, this is very frustrating, actually maddening. I almost feel like I have

been put in this position so that I can speak out about this topic here and

work with the local hospitals to try and make sure that parents are aware of

the risks and how they can be minimized. Something has to be done!

[Guest guest]

Wow - That's a lot for a few short months. Grace is very fortunate to have

such a diligent parent to see her thru all of this! If you continue to have

any concerns about hearing, please feel free to e-mail me. Our family has

gained a wealth of information on the subject over the last 2.5 years. Robyn

[Guest guest]

:

Please let me know...My husband and I would like to sign. Thanks!

Sue W and (6 months)

----- Original Message -----

From: Allchin <catall@...>

<Plagiocephalyonelist>

Sent: Friday, March 31, 2000 1:39 PM

Subject: Re: Grace created a consonant chain!!!

> Judy,

>

> I am writing a letter to the Academy of Pediatrics on this very subject,

> which I invite all parents to sign who so desire. I will post it to this

> group in the next day or so.

>

>

>

> ----- Original Message -----

> From: <rmissirian@...>

> <Plagiocephalyonelist>

> Sent: Thursday, March 30, 2000 10:39 PM

> Subject: Re: Grace created a consonant chain!!!

>

>

> > Robyn

> >

> > We never knew about plagio and helmet/banding too. Wish I still didn't!

> >

> > Shame, shame on the American Academy of Pediatrics for not informing

> parents.

> > If you search on their website on head deformation you will find a

study

> > which shows that they knew this was a side effect of back/side sleeping

> when

> > they made the recommendation in 1992. They have this recommendation in

> > effect for ten years and are encouraging studies (as they made no U.S.

> > studies before the recommendation). We are the U.S. guinea pigs. The

> " Back

> > to Sleep " pamphlet they gave me in the hospital actually says " no other

> > problems " were found with regard to back/side sleeping besides something

> > about spitting up.

> >

> > In my lifetime I will never, never be able to forgive them for what they

> have

> > done to my baby.

> >

> > Judy

> >

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

> > PERFORM CPR ON YOUR APR!

> > Get a NextCard Visa, in 30 seconds! Get rates as low as

> > 0.0% Intro or 9.9% Fixed APR and no hidden fees.

> > Apply NOW!

> > 1/2121/3/_/689409/_/954484774/

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

> >

> >

[Guest guest]

Sue,

Just let me know your name and your husband's and your city and state. You

can email directly at catall@...

----- Original Message -----

From: " Sue W " <sue.w.1@...>

<Plagiocephalyonelist>

Sent: Friday, March 31, 2000 4:58 PM

Subject: Re: Grace created a consonant chain!!!

> :

>

> Please let me know...My husband and I would like to sign. Thanks!

>

> Sue W and (6 months)

> ----- Original Message -----

> From: Allchin <catall@...>

> <Plagiocephalyonelist>

> Sent: Friday, March 31, 2000 1:39 PM

> Subject: Re: Grace created a consonant chain!!!

>

>

> > Judy,

> >

> > I am writing a letter to the Academy of Pediatrics on this very subject,

> > which I invite all parents to sign who so desire. I will post it to

this

> > group in the next day or so.

> >

> >

> >

> > ----- Original Message -----

> > From: <rmissirian@...>

> > <Plagiocephalyonelist>

> > Sent: Thursday, March 30, 2000 10:39 PM

> > Subject: Re: Grace created a consonant chain!!!

> >

> >

> > > Robyn

> > >

> > > We never knew about plagio and helmet/banding too. Wish I still

didn't!

> > >

> > > Shame, shame on the American Academy of Pediatrics for not informing

> > parents.

> > > If you search on their website on head deformation you will find a

> study

> > > which shows that they knew this was a side effect of back/side

sleeping

> > when

> > > they made the recommendation in 1992. They have this recommendation

in

> > > effect for ten years and are encouraging studies (as they made no U.S.

> > > studies before the recommendation). We are the U.S. guinea pigs. The

> > " Back

> > > to Sleep " pamphlet they gave me in the hospital actually says " no

other

> > > problems " were found with regard to back/side sleeping besides

something

> > > about spitting up.

> > >

> > > In my lifetime I will never, never be able to forgive them for what

they

> > have

> > > done to my baby.

> > >

> > > Judy

> > >

> >

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

> > > PERFORM CPR ON YOUR APR!

> > > Get a NextCard Visa, in 30 seconds! Get rates as low as

> > > 0.0% Intro or 9.9% Fixed APR and no hidden fees.

> > > Apply NOW!

> > > 1/2121/3/_/689409/_/954484774/

> >

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

> > >

> > >

[Guest guest]

I wrote to the President of the American Academy of Pediatrics quite a while

ago and have not heard anything from him.

Judy

[Guest guest]

Thanks so much, Robyn. The fact she's progressing in the early stages of speech (blowing raspberries and that wonderful "bababa") really allays a lot of my fears for her hearing. I can't wait for Grace to "talk" to her therapist next week!

It's funny. Grace just had an evaluation 2 weeks ago to see how much she's progressed in the last 3 months. The fact she wasn't babbling was a "check" against her development. And here we are, 2 little weeks later and she's prattling on as if she's done it forever! :)

C./subscribe/Plagiocephaly

----- Original Message -----

From: srmj4@...

Plagiocephalyonelist

Sent: Friday, March 31, 2000 7:54 PM

Subject: Re: Grace created a consonant chain!!!

Wow - That's a lot for a few short months. Grace is very fortunate to have such a diligent parent to see her thru all of this! If you continue to have any concerns about hearing, please feel free to e-mail me. Our family has gained a wealth of information on the subject over the last 2.5 years. Robyn

[Guest guest]

That's great! It's amazing at this age what they go from not doing to doing

in a matter of days and weeks. Of course to a worried parent a few days or a

week can feel like an eternity. I go thru that all the time with Jessie when

comparing her to her 3 year old brother (yes, I know bad idea). I think

was doing x by x and how could Jessie ever roll over or sit up when

he did etc. And sure enough she does it when I least expect it. Then I

look back and think I'm not going to worry next time, but of course I do :>).

Wouldn't it be nice to go thru one day w/o any worries and know everything

will be fine with our children!

[Guest guest]

Yes, WOULDN'T is be nice not to worry. But, like I've said before, that's a Mother's prerogative - what would we do if we didn't worry?

I have to really halt myself from comparing my kids, too. I always thought Gage (my 6 year old) was slow to roll, slow to sit, etc etc, due to his size as a baby. But, when Jackie, Grace's PT, looked at Gage's baby book to try to squelch some of my fears at Grace's slow development ("look, she's only *so* many months behind what Gage was doing") it turned out he was pretty advanced. Funny. I guess I was a silly first time Mom who wasn't giving her kid the credit he deserved

C./subscribe/Plagiocephaly

----- Original Message -----

From: srmj4@...

Plagiocephalyonelist

Sent: Saturday, April 01, 2000 9:33 AM

Subject: Re: Grace created a consonant chain!!!

That's great! It's amazing at this age what they go from not doing to doing in a matter of days and weeks. Of course to a worried parent a few days or a week can feel like an eternity. I go thru that all the time with Jessie when comparing her to her 3 year old brother (yes, I know bad idea). I think was doing x by x and how could Jessie ever roll over or sit up when he did etc. And sure enough she does it when I least expect it. Then I look back and think I'm not going to worry next time, but of course I do :>). Wouldn't it be nice to go thru one day w/o any worries and know everything will be fine with our children!

[Guest guest]

Judy,

That's too bad. What did you say in your letter?

Do you want to add your name to ours?

----- Original Message -----

From: <rmissirian@...>

<Plagiocephalyonelist>

Sent: Friday, March 31, 2000 11:45 PM

Subject: Re: Grace created a consonant chain!!!

>

>

> I wrote to the President of the American Academy of Pediatrics quite a

while

> ago and have not heard anything from him.

>

> Judy

>

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

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> 1/937/3/_/689409/_/954575107/

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

>

>

>

>

>

[Guest guest]

I came in on the end of this conversation but my child had a brain stem hearing

test and we were able to make him really sleepy (kept him up past his nap) and

he slept through the entire hearing test (kind of weird that they can test

asleep) in fact, because he was asleep the test was over in 60 seconds. We also

had a CT done on him last week and were able to by-pass the sedation in that

process by doing the same thing. It is worth a try!!

AAKARA@... wrote:

> I think the hearing test Robyn referred to is a brain stem hearing test, and

> yes they are sedated during the test. Kimry

>

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

> Get a NextCard Visa, in 30 seconds!

> 1. Fill in the brief application

> 2. Receive approval decision within 30 seconds

> 3. Get rates as low as 2.9% Intro or 9.9% Fixed APR

> Apply NOW!

> 1/975/3/_/689409/_/954526134/

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

>

>

[Guest guest]

Thanks! I'm not sure Grace will have to have the test for her hearing. There are probably some parents here who's children will be going through a CT scan in the near future. Maybe that tidbit of info will help them.

C.

/subscribe/Plagiocephaly

----- Original Message -----

From:

Plagiocephalyonelist

Sent: Sunday, April 02, 2000 11:28 AM

Subject: Re: Grace created a consonant chain!!!

I came in on the end of this conversation but my child had a brain stem hearingtest and we were able to make him really sleepy (kept him up past his nap) andhe slept through the entire hearing test (kind of weird that they can testasleep) in fact, because he was asleep the test was over in 60 seconds. We alsohad a CT done on him last week and were able to by-pass the sedation in thatprocess by doing the same thing. It is worth a try!!AAKARA@... wrote:> I think the hearing test Robyn referred to is a brain stem hearing test, and> yes they are sedated during the test. Kimry>> ------------------------------------------------------------------------> Get a NextCard Visa, in 30 seconds!> 1. Fill in the brief application> 2. Receive approval decision within 30 seconds> 3. Get rates as low as 2.9% Intro or 9.9% Fixed APR> Apply NOW!> 1/975/3/_/689409/_/954526134/> ------------------------------------------------------------------------>>