MY DAUGHTER IS NOW 11 AND SHE HAS BECOME VERY OVER WEIGHT WITH THE
MEDICATION. WE HAVE TRIED A HEALER OUT OF DESPERATION. IT WAS AMAZING WHAT
HE WAS ABLE TO TELL US ABOUT MY DAUGHTERS CONDISHTION. HE FEELS HE HAS BEING
ABLE TO HELP HER CONDISHTION. HE HAS TOLD US TO NOW WATCH THE READINGS ON
HER BLOOD TESTS. HE SAID IT WILL TAKE UP TO 12 MONTHS BEFORE HE FEELS SHE
WILL BE WILL BE BETTER AND COULD POSSIBLY COME OFF HER MEDICATION. IF YOU
WOULD LIKE TO KNOW MORE PLEASE E MAIL BACK AND I WILL KEEP YOU UP TO DATE
AND GIVE YOU MORE INFORMATION ANDREW
-----Original Message-----
From: karen lange <kmlange27@...>
To: adrenal_hyperplasia@yahoogroups.com
<adrenal_hyperplasia@yahoogroups.com>
Date: Tuesday, 14 August 2001 22:35
Subject: Re: [adrenal_hyperplasia] clitoplasty


>
>--- JHmphr3@... wrote:
>> My doctor is recommending the clitoplasty for my
>> daughter Hunter, but
>> I am not sure how I feel about this. I would
>> appreciate anyones
>> feelings, suggestions, and advice on this sensitive
>> situation.
>> Thanks,
>>       Jenny
>>
>> Jenny,
>
>    Why is your doctor recommending this operation for
>your daughter.If I was a mother I would be the one
>making that dection and not the doctor.your daughter
>should decide on having this done on her when she is
>older. As I have talked to some ladies who have had
>this done and they feel like they have been raped all
>because no one asked what they wanted done to their
>bottom.
>
>Karen
>
>
>__________________________________________________
>Do You Yahoo!?
>Make international calls for as low as $.04/minute with Yahoo! Messenger
>http://phonecard.yahoo.com/
>
>
>
>Your use of Yahoo! Groups is subject to http://docs.yahoo.com/info/terms/
>
>

I was born in 1980 and did have the clitoplasty done when I was very little.
I also had to go back again when I was 14, but now they can do everything at
once.  I am very happy w/ the outcomes and would definitely recommend the
early surgery.  Unfortunately, some people have had bad experiences, however
I believe that was even before I was born, and I'm sure science has improved
greatly since then.
Good luck with your decision.
~melissa
  (micebike@...)

Hi Jenny,  when my daughter was 16 months old we had the clitoplasty done. We
are so glad we had it done.  She is 5 years old now and you would never know
that it was done.  We had it done because we didnt want her growing up
thinking there was something wrong with her, that she didnt look like other
girls.  She recovered very fast. She was only in the hospital for 1 1/2 days.
  Healing time was about 3 weeks. Let me know if you have other questions I'll
be happy to answer them.  Barb

--- JHmphr3@... wrote:
> My doctor is recommending the clitoplasty for my
> daughter Hunter, but
> I am not sure how I feel about this. I would
> appreciate anyones
> feelings, suggestions, and advice on this sensitive
> situation.
> Thanks,
>       Jenny
>
> Jenny,

     Why is your doctor recommending this operation for
your daughter.If I was a mother I would be the one
making that dection and not the doctor.your daughter
should decide on having this done on her when she is
older. As I have talked to some ladies who have had
this done and they feel like they have been raped all
because no one asked what they wanted done to their
bottom.

Karen


__________________________________________________
Do You Yahoo!?
Make international calls for as low as $.04/minute with Yahoo! Messenger
http://phonecard.yahoo.com/

My doctor is recommending the clitoplasty for my daughter Hunter, but
I am not sure how I feel about this. I would appreciate anyones
feelings, suggestions, and advice on this sensitive situation.
Thanks,
       Jenny

Hello, and congratulations on your new baby, Anthony.  I am so new to this
board, I know nothing about it, maybe when you get some free time, you will
explain some of it to me. I need to learn more.
How are you feeling? Tell me a little about  yourself.
.

I was just released from the Hospital, second time since July 25, Pneumonia,
now they have found a cyst on my left Kidney, and it is shrinking and will
eventually shut down. I know I can live with my right Kidney as long as it
stays healthy.

I hope you will write often
Your friend
Nancy


-----Original Message-----
From: preston <preston@...>
To: adrenal_hyperplasia@yahoogroups.com
<adrenal_hyperplasia@yahoogroups.com>
Date: Thursday, August 09, 2001 8:16 PM
Subject: Re: [adrenal_hyperplasia] Digest Number 76


>I just had a new baby
>born 2 August 01
>Anthony Roger Preston
>
>I had genetic testing for CAH (two other children - boys with CAH ages 7
and
>3 years old). Anthony does not have CAH.
>
>preston@...
>
>----- Original Message -----
>From: <adrenal_hyperplasia@yahoogroups.com>
>To: <adrenal_hyperplasia@yahoogroups.com>
>Sent: Sunday, July 22, 2001 5:07 AM
>Subject: [adrenal_hyperplasia] Digest Number 76
>
>
>> There is 1 message in this issue.
>>
>> Topics in this digest:
>>
>>       1. Re: Digest Number 75
>>            From: "preston" <preston@...>
>>
>>
>> ________________________________________________________________________
>> ________________________________________________________________________
>>
>> Message: 1
>>    Date: Sun, 22 Jul 2001 00:38:53 -0400
>>    From: "preston" <preston@...>
>> Subject: Re: Digest Number 75
>>
>> The genetic testing that is the most accurate is done in a lab at Cornell
>> University in New York City. Don't panic - you don't have to go to New
>York.
>> The blood is taken locally and sent to New York.  It is DNA testing for
>CAH.
>> It cost $600 a person. My insurance covered the testing.  It takes two
>> people with the CAH gene (carriers) to have a child with CAH and then it
>is
>> 1 in 4 chance. So both you and your partner would BOTH have to carry the
>> gene for CAH.... odds are against it but it does happen and that is why
we
>> have two children with CAH.
>>
>> Roberta
>> ----- Original Message -----
>> From: <adrenal_hyperplasia@yahoogroups.com>
>> To: <adrenal_hyperplasia@yahoogroups.com>
>> Sent: Saturday, July 21, 2001 5:48 AM
>> Subject: [adrenal_hyperplasia] Digest Number 75
>>
>>
>> > There are 2 messages in this issue.
>> >
>> > Topics in this digest:
>> >
>> >       1. question from real novice
>> >            From: judy hastie <judyjhastie@...>
>> >       2. Re: question from real novice
>> >            From: karen lange <kmlange27@...>
>> >
>> >
>> >
________________________________________________________________________
>> >
________________________________________________________________________
>> >
>> > Message: 1
>> >    Date: Fri, 20 Jul 2001 10:53:13 -0700 (PDT)
>> >    From: judy hastie <judyjhastie@...>
>> > Subject: question from real novice
>> >
>> > I have just learned about CAH so please forgive me if
>> > this is a stupid question.  We are planning a family
>> > and so gathering information about any hereditary
>> > medical conditions that run in our families.  There
>> > was a female family member born in about 1928 who was
>> > first thought to be male, given a boy's name, but soon
>> > was found to be female. That's all I know. This girl
>> > grew up, had children and leads a healthy, normal
>> > life. She has not told family members that she suffers
>> > from CAH or any hereditary medical condition. We do
>> > not feel comfortable asking her about it. Are we crazy
>> > to suspect the CAH gene?  Or would it be prudent to
>> > get genetic counselling on this issue?  Is it an easy
>> > test?
>> > Thanks!
>> >
>> > __________________________________________________
>> > Do You Yahoo!?
>> > Get personalized email addresses from Yahoo! Mail
>> > http://personal.mail.yahoo.com/
>> >
>> >
>> >
________________________________________________________________________
>> >
________________________________________________________________________
>> >
>> > Message: 2
>> >    Date: Fri, 20 Jul 2001 13:04:59 -0700 (PDT)
>> >    From: karen lange <kmlange27@...>
>> > Subject: Re: question from real novice
>> >
>> > --- judy hastie <judyjhastie@...> wrote:
>> > > I have just learned about CAH so please forgive me
>> > > if
>> > > this is a stupid question.  We are planning a family
>> > > and so gathering information about any hereditary
>> > > medical conditions that run in our families.  There
>> > > was a female family member born in about 1928 who
>> > > was
>> > > first thought to be male, given a boy's name, but
>> > > soon
>> > > was found to be female. That's all I know. This girl
>> > > grew up, had children and leads a healthy, normal
>> > > life. She has not told family members that she
>> > > suffers
>> > > from CAH or any hereditary medical condition. We do
>> > > not feel comfortable asking her about it. Are we
>> > > crazy
>> > > to suspect the CAH gene?  Or would it be prudent to
>> > > get genetic counselling on this issue?  Is it an
>> > > easy
>> > > test?
>> > > Thanks!
>> > >
>> > > __Hi Judy
>> > I'm only 28 so I only know a little about my cah. I
>> > know it runs in the family. If I was you I would try
>> > to ask her about cah and I think there is a test for
>> > it.
>> >    Now one thing if you have a cah gene don't decide
>> > not to have kids,because they are special people.
>> >
>> > Karen________________________________________________
>> > > Do You Yahoo!?
>> > > Get personalized email addresses from Yahoo! Mail
>> > > http://personal.mail.yahoo.com/
>> > >
>> >
>> >
>> > __________________________________________________
>> > Do You Yahoo!?
>> > Get personalized email addresses from Yahoo! Mail
>> > http://personal.mail.yahoo.com/
>> >
>> >
>> >
________________________________________________________________________
>> >
________________________________________________________________________
>> >
>> >
>> >
>> > Your use of Yahoo! Groups is subject to
>http://docs.yahoo.com/info/terms/
>> >
>> >
>>
>>
>>
>> ________________________________________________________________________
>> ________________________________________________________________________
>>
>>
>>
>> Your use of Yahoo! Groups is subject to http://docs.yahoo.com/info/terms/
>>
>>
>
>
>
>
>Your use of Yahoo! Groups is subject to http://docs.yahoo.com/info/terms/
>
>

I just had a new baby
born 2 August 01
Anthony Roger Preston

I had genetic testing for CAH (two other children - boys with CAH ages 7 and
3 years old). Anthony does not have CAH.

preston@...

----- Original Message -----
From: <adrenal_hyperplasia@yahoogroups.com>
To: <adrenal_hyperplasia@yahoogroups.com>
Sent: Sunday, July 22, 2001 5:07 AM
Subject: [adrenal_hyperplasia] Digest Number 76


> There is 1 message in this issue.
>
> Topics in this digest:
>
>       1. Re: Digest Number 75
>            From: "preston" <preston@...>
>
>
> ________________________________________________________________________
> ________________________________________________________________________
>
> Message: 1
>    Date: Sun, 22 Jul 2001 00:38:53 -0400
>    From: "preston" <preston@...>
> Subject: Re: Digest Number 75
>
> The genetic testing that is the most accurate is done in a lab at Cornell
> University in New York City. Don't panic - you don't have to go to New
York.
> The blood is taken locally and sent to New York.  It is DNA testing for
CAH.
> It cost $600 a person. My insurance covered the testing.  It takes two
> people with the CAH gene (carriers) to have a child with CAH and then it
is
> 1 in 4 chance. So both you and your partner would BOTH have to carry the
> gene for CAH.... odds are against it but it does happen and that is why we
> have two children with CAH.
>
> Roberta
> ----- Original Message -----
> From: <adrenal_hyperplasia@yahoogroups.com>
> To: <adrenal_hyperplasia@yahoogroups.com>
> Sent: Saturday, July 21, 2001 5:48 AM
> Subject: [adrenal_hyperplasia] Digest Number 75
>
>
> > There are 2 messages in this issue.
> >
> > Topics in this digest:
> >
> >       1. question from real novice
> >            From: judy hastie <judyjhastie@...>
> >       2. Re: question from real novice
> >            From: karen lange <kmlange27@...>
> >
> >
> > ________________________________________________________________________
> > ________________________________________________________________________
> >
> > Message: 1
> >    Date: Fri, 20 Jul 2001 10:53:13 -0700 (PDT)
> >    From: judy hastie <judyjhastie@...>
> > Subject: question from real novice
> >
> > I have just learned about CAH so please forgive me if
> > this is a stupid question.  We are planning a family
> > and so gathering information about any hereditary
> > medical conditions that run in our families.  There
> > was a female family member born in about 1928 who was
> > first thought to be male, given a boy's name, but soon
> > was found to be female. That's all I know. This girl
> > grew up, had children and leads a healthy, normal
> > life. She has not told family members that she suffers
> > from CAH or any hereditary medical condition. We do
> > not feel comfortable asking her about it. Are we crazy
> > to suspect the CAH gene?  Or would it be prudent to
> > get genetic counselling on this issue?  Is it an easy
> > test?
> > Thanks!
> >
> > __________________________________________________
> > Do You Yahoo!?
> > Get personalized email addresses from Yahoo! Mail
> > http://personal.mail.yahoo.com/
> >
> >
> > ________________________________________________________________________
> > ________________________________________________________________________
> >
> > Message: 2
> >    Date: Fri, 20 Jul 2001 13:04:59 -0700 (PDT)
> >    From: karen lange <kmlange27@...>
> > Subject: Re: question from real novice
> >
> > --- judy hastie <judyjhastie@...> wrote:
> > > I have just learned about CAH so please forgive me
> > > if
> > > this is a stupid question.  We are planning a family
> > > and so gathering information about any hereditary
> > > medical conditions that run in our families.  There
> > > was a female family member born in about 1928 who
> > > was
> > > first thought to be male, given a boy's name, but
> > > soon
> > > was found to be female. That's all I know. This girl
> > > grew up, had children and leads a healthy, normal
> > > life. She has not told family members that she
> > > suffers
> > > from CAH or any hereditary medical condition. We do
> > > not feel comfortable asking her about it. Are we
> > > crazy
> > > to suspect the CAH gene?  Or would it be prudent to
> > > get genetic counselling on this issue?  Is it an
> > > easy
> > > test?
> > > Thanks!
> > >
> > > __Hi Judy
> > I'm only 28 so I only know a little about my cah. I
> > know it runs in the family. If I was you I would try
> > to ask her about cah and I think there is a test for
> > it.
> >    Now one thing if you have a cah gene don't decide
> > not to have kids,because they are special people.
> >
> > Karen________________________________________________
> > > Do You Yahoo!?
> > > Get personalized email addresses from Yahoo! Mail
> > > http://personal.mail.yahoo.com/
> > >
> >
> >
> > __________________________________________________
> > Do You Yahoo!?
> > Get personalized email addresses from Yahoo! Mail
> > http://personal.mail.yahoo.com/
> >
> >
> > ________________________________________________________________________
> > ________________________________________________________________________
> >
> >
> >
> > Your use of Yahoo! Groups is subject to
http://docs.yahoo.com/info/terms/
> >
> >
>
>
>
> ________________________________________________________________________
> ________________________________________________________________________
>
>
>
> Your use of Yahoo! Groups is subject to http://docs.yahoo.com/info/terms/
>
>

The genetic testing that is the most accurate is done in a lab at Cornell
University in New York City. Don't panic - you don't have to go to New York.
The blood is taken locally and sent to New York.  It is DNA testing for CAH.
It cost $600 a person. My insurance covered the testing.  It takes two
people with the CAH gene (carriers) to have a child with CAH and then it is
1 in 4 chance. So both you and your partner would BOTH have to carry the
gene for CAH.... odds are against it but it does happen and that is why we
have two children with CAH.

Roberta
----- Original Message -----
From: <adrenal_hyperplasia@yahoogroups.com>
To: <adrenal_hyperplasia@yahoogroups.com>
Sent: Saturday, July 21, 2001 5:48 AM
Subject: [adrenal_hyperplasia] Digest Number 75


> There are 2 messages in this issue.
>
> Topics in this digest:
>
>       1. question from real novice
>            From: judy hastie <judyjhastie@...>
>       2. Re: question from real novice
>            From: karen lange <kmlange27@...>
>
>
> ________________________________________________________________________
> ________________________________________________________________________
>
> Message: 1
>    Date: Fri, 20 Jul 2001 10:53:13 -0700 (PDT)
>    From: judy hastie <judyjhastie@...>
> Subject: question from real novice
>
> I have just learned about CAH so please forgive me if
> this is a stupid question.  We are planning a family
> and so gathering information about any hereditary
> medical conditions that run in our families.  There
> was a female family member born in about 1928 who was
> first thought to be male, given a boy's name, but soon
> was found to be female. That's all I know. This girl
> grew up, had children and leads a healthy, normal
> life. She has not told family members that she suffers
> from CAH or any hereditary medical condition. We do
> not feel comfortable asking her about it. Are we crazy
> to suspect the CAH gene?  Or would it be prudent to
> get genetic counselling on this issue?  Is it an easy
> test?
> Thanks!
>
> __________________________________________________
> Do You Yahoo!?
> Get personalized email addresses from Yahoo! Mail
> http://personal.mail.yahoo.com/
>
>
> ________________________________________________________________________
> ________________________________________________________________________
>
> Message: 2
>    Date: Fri, 20 Jul 2001 13:04:59 -0700 (PDT)
>    From: karen lange <kmlange27@...>
> Subject: Re: question from real novice
>
> --- judy hastie <judyjhastie@...> wrote:
> > I have just learned about CAH so please forgive me
> > if
> > this is a stupid question.  We are planning a family
> > and so gathering information about any hereditary
> > medical conditions that run in our families.  There
> > was a female family member born in about 1928 who
> > was
> > first thought to be male, given a boy's name, but
> > soon
> > was found to be female. That's all I know. This girl
> > grew up, had children and leads a healthy, normal
> > life. She has not told family members that she
> > suffers
> > from CAH or any hereditary medical condition. We do
> > not feel comfortable asking her about it. Are we
> > crazy
> > to suspect the CAH gene?  Or would it be prudent to
> > get genetic counselling on this issue?  Is it an
> > easy
> > test?
> > Thanks!
> >
> > __Hi Judy
> I'm only 28 so I only know a little about my cah. I
> know it runs in the family. If I was you I would try
> to ask her about cah and I think there is a test for
> it.
>    Now one thing if you have a cah gene don't decide
> not to have kids,because they are special people.
>
> Karen________________________________________________
> > Do You Yahoo!?
> > Get personalized email addresses from Yahoo! Mail
> > http://personal.mail.yahoo.com/
> >
>
>
> __________________________________________________
> Do You Yahoo!?
> Get personalized email addresses from Yahoo! Mail
> http://personal.mail.yahoo.com/
>
>
> ________________________________________________________________________
> ________________________________________________________________________
>
>
>
> Your use of Yahoo! Groups is subject to http://docs.yahoo.com/info/terms/
>
>

--- judy hastie <judyjhastie@...> wrote:
> I have just learned about CAH so please forgive me
> if
> this is a stupid question.  We are planning a family
> and so gathering information about any hereditary
> medical conditions that run in our families.  There
> was a female family member born in about 1928 who
> was
> first thought to be male, given a boy's name, but
> soon
> was found to be female. That's all I know. This girl
> grew up, had children and leads a healthy, normal
> life. She has not told family members that she
> suffers
> from CAH or any hereditary medical condition. We do
> not feel comfortable asking her about it. Are we
> crazy
> to suspect the CAH gene?  Or would it be prudent to
> get genetic counselling on this issue?  Is it an
> easy
> test?
> Thanks!
>
> __Hi Judy
I'm only 28 so I only know a little about my cah. I
know it runs in the family. If I was you I would try
to ask her about cah and I think there is a test for
it.
    Now one thing if you have a cah gene don't decide
not to have kids,because they are special people.

Karen________________________________________________
> Do You Yahoo!?
> Get personalized email addresses from Yahoo! Mail
> http://personal.mail.yahoo.com/
>


__________________________________________________
Do You Yahoo!?
Get personalized email addresses from Yahoo! Mail
http://personal.mail.yahoo.com/

I have just learned about CAH so please forgive me if
this is a stupid question.  We are planning a family
and so gathering information about any hereditary
medical conditions that run in our families.  There
was a female family member born in about 1928 who was
first thought to be male, given a boy's name, but soon
was found to be female. That's all I know. This girl
grew up, had children and leads a healthy, normal
life. She has not told family members that she suffers
from CAH or any hereditary medical condition. We do
not feel comfortable asking her about it. Are we crazy
to suspect the CAH gene?  Or would it be prudent to
get genetic counselling on this issue?  Is it an easy
test?
Thanks!

__________________________________________________
Do You Yahoo!?
Get personalized email addresses from Yahoo! Mail
http://personal.mail.yahoo.com/

--- Laurel Meier <lmeier68@...> wrote:

<HR>
<html><DIV>
<P><BR><BR></P>
<DIV></DIV>
<P><BR>Hi Karen,</P></DIV>
<P>The web site address for the Wisconsin CAH support
group is
communities.msn.com/CAHFamiliesfromWisconsin.&nbsp; I
look forward to seeing you there.&nbsp; Our picnic
will be Saturday August 25th in Stevens Point, I hope
you can make it.&nbsp; </P>
<DIV></DIV>
<P>I hope this helps!</P>
<DIV></DIV>
<P>Laurel<BR></P>
<DIV></DIV>
<DIV></DIV>
<DIV></DIV>
<DIV></DIV>
<DIV></DIV>&gt;From: kmlange27@...
<DIV></DIV>
<DIV></DIV>&gt;Reply-To:
adrenal_hyperplasia@yahoogroups.com
<DIV></DIV>
<DIV></DIV>&gt;To: adrenal_hyperplasia@yahoogroups.com

<DIV></DIV>
<DIV></DIV>&gt;Subject: [adrenal_hyperplasia] Help?
<DIV></DIV>
<DIV></DIV>&gt;Date: Tue, 03 Jul 2001 18:32:42 -0000
<DIV></DIV>
<DIV></DIV>&gt;
<DIV></DIV>
<DIV></DIV>&gt;I need to find web site to WI cah
group.I got the letter,but can't
<DIV></DIV>
<DIV></DIV>&gt;remember it.I hope to see you all at
Steven's Point on july 25.I'm
<DIV></DIV>
<DIV></DIV>&gt;going to try my best to get there.
<DIV></DIV>
<DIV></DIV>&gt;
<DIV></DIV>
<DIV></DIV>&gt;Karen
<DIV></DIV>
<DIV></DIV>&gt;
<DIV></DIV>
<DIV></DIV><br clear=all><hr>Get your FREE download of
MSN Explorer at <a
href="http://explorer.msn.com">http://explorer.msn.com</a><br></p>


<br>
<tt>Your use of Yahoo! Groups is subject to the <a
href="http://docs.yahoo.com/info/terms/">Yahoo! Terms
of Service</a>.</tt>
</br>

</html>

Laurel,
      thank you for the web address.I have that week
off and will be in Madison for therapy appointment and
do plan to see you all at Stevens Point.

Karen


__________________________________________________
Do You Yahoo!?
Get personalized email addresses from Yahoo! Mail
http://personal.mail.yahoo.com/

The web site address for the Wisconsin CAH support group is communities.msn.com/CAHFamiliesfromWisconsin.  I look forward to seeing you there.  Our picnic will be Saturday August 25th in Stevens Point, I hope you can make it. 

I hope this helps!

Laurel

I need to find web site to WI cah group.I got the letter,but can't
remember it.I hope to see you all at Steven's Point on july 25.I'm
going to try my best to get there.

Karen

I'm 20yrs old and have gone through 2 surgeries due to CAH.  one when i was
5?  which i hardly remember at all, and then another minor one when i was 14.
  (i think they do everything in one surgery now.)   anyway, everything went
fine and i'm very glad i did have them done and there has been no 'damage' as
far as i can tell :-)    i am still a virgin, so i don't know about the whole
sex thing, but i'm not particularly worried.  i've heard that there could  be
some problems trying to get pregnant, but most of the concerns i've heard
voiced are about vaginal births and that they can be somewhat difficult,
although i don't know this for sure.   C sections are always an option I
guess.  Anyway, I think the surgery is a very good idea and will help your
daughter feel more normal than she otherwise would.
~melissa

My daughter had two surgeries.  One at 3 mos. and one at 18 mos to correct
her genital area.  I highly recommend it, especially when they are little as
they do not remember the surgeries and they bounce back so quickly.  She
spent one night in the hospital for each surgery.  They went well with no
complications.  Healing time was only a couple of weeks, if that, and she
experienced no pain during that time.  Her vaginal area looks like any other
little girl with minimal scarring.  If you want your little girl to look
like all other little girls, its the only way to go.  You don't want her to
be teased when she gets older or be ashamed of herself.

As far as sexual side effects when they get older, there may be some.  I was
told she will need to go back in around puberty to be stretched, as their
hole opening is smaller than most girls.  As far as our children having
kids, its anybody's guess.  As long as our children have normal periods,
they should be able to conceive.  I've spoken to a couple of teenagers by
e-mail, and they have said sex may be a bit more painful for them and
another one said she is afraid to have sex.

My feelings are is to give my daughter a normal life and correcting her
vaginal area was a big part of that.  My husband and I will deal with
whatever else comes our way when she gets older, because at 7 years old,
there isn't a whole lot more we can do right now.  I am just very thankful
for the wonderful doctors we have here in Pittsburgh that have kept my
daughter healthy and happy.

Good luck.

Debbie
----- Original Message -----
From: <JHmphr3@...>
To: <adrenal_hyperplasia@yahoogroups.com>
Sent: Tuesday, June 19, 2001 10:03 AM
Subject: [adrenal_hyperplasia] surgery


> My daughter's doctor is recommending that we have the clitoplasty
> done before too long. I would like to recieve others' opinions
> regaurding this before I make a decision. Are there serious sexual
> side effects? Has anyone had it done themselves? I just want to be as
> informed as possible before I agree to anything. Thank you
>
>
>
>
> Your use of Yahoo! Groups is subject to http://docs.yahoo.com/info/terms/
>
>
>

My daughter's doctor is recommending that we have the clitoplasty
done before too long. I would like to recieve others' opinions
regaurding this before I make a decision. Are there serious sexual
side effects? Has anyone had it done themselves? I just want to be as
informed as possible before I agree to anything. Thank you

I have two sons (one daughter died from Adrenal Crisis - our second child at
age 2 years old because of fever). If you have an adrenal insufficiency and
it is not managed right or not treated and you get a high fever that will
not reduce, vomiting or diahrea, serious injury, surgery... you can die from
an adrenal crisis (like my Jessica - she had a fever and we knew she had an
andrenal insufficiency but the doctor did not tell us to give an injection
of the cortisol, which we should have and taken her to the hospital of IV
fluids (salt/sugars) and reduce the fever.... the doctor insisted to just
double the cortef and that was not enough during a high fever that would not
reduce....I called him three times that night.. same stupid answer... and he
even said to stop calling him... in the mornin she was in adrenal shock).
     Symptoms of adrenal insufficiency include - weight lost; vomiting;
dizzy, tired; pain in the lower back, darken skin; low blood pressure;
fertility problems; acme - bad pimples in teenagers; hair lost; etc (one or
some of these.... not always all of these).
      I suggest genetic testing and the 60 minute cortisol challenge test at
between 6 am and 8 am  (have 60 minute cortisol challenge the done one month
and then the next month again ... because of accurancy and sluggish response
of the adrenal gland that has never been challenged). Genetic testing is a
blood sample taken and sent to Dr. Maria New at Cornell University. She is
the expert on DNA testing for Adrenal Insufficiencies. CAH can be onset or
occur in older people and so can Addisons. Addisons is typically found in
people over 40 years old. I would have your doctor take plasma renin blood
test, chem 8 blood test; testerone and 17OHP (at 8 am).

Roberta Preston
preston@...
----- Original Message -----
From: <adrenal_hyperplasia@yahoogroups.com>
To: <adrenal_hyperplasia@yahoogroups.com>
Sent: Saturday, May 05, 2001 7:22 AM
Subject: [adrenal_hyperplasia] Digest Number 69


> There are 2 messages in this issue.
>
> Topics in this digest:
>
>       1. Re: Digest Number 67
>            From: "preston" <preston@...>
>       2. Re: Fwd: Message from Lisa
>            From: chrissyzim@...
>
>
> ________________________________________________________________________
> ________________________________________________________________________
>
> Message: 1
>    Date: Thu, 3 May 2001 20:56:10 -0400
>    From: "preston" <preston@...>
> Subject: Re: Digest Number 67
>
> I don't see any attachments.. or whatever.
>
> Roberta Preston
> preston@...
> ----- Original Message -----
> From: <adrenal_hyperplasia@yahoogroups.com>
> To: <adrenal_hyperplasia@yahoogroups.com>
> Sent: Thursday, May 03, 2001 5:03 AM
> Subject: [adrenal_hyperplasia] Digest Number 67
>
>
> > There is 1 message in this issue.
> >
> > Topics in this digest:
> >
> >       1. Fwd: CAH and pregnancy
> >            From: rarediseases@...
> >
> >
> > ________________________________________________________________________
> > ________________________________________________________________________
> >
> > Message: 1
> >    Date: Mon, 30 Apr 2001 19:20:37 EDT
> >    From: rarediseases@...
> > Subject: Fwd: CAH and pregnancy
> >
> >
> >
> >
> > [This message contained attachments]
> >
> >
> >
> > ________________________________________________________________________
> > ________________________________________________________________________
> >
> >
> >
> > Your use of Yahoo! Groups is subject to
http://docs.yahoo.com/info/terms/
> >
> >
>
>
>
>
> ________________________________________________________________________
> ________________________________________________________________________
>
> Message: 2
>    Date: Fri, 4 May 2001 09:20:41 EDT
>    From: chrissyzim@...
> Subject: Re: Fwd: Message from Lisa
>
> Lisa.
> Hello my name is Christie and I have a 8 year old daughter with CAH.  She
was
> diagnosed at the age of 6 weeks and has been on steroids since then and
takes
> it 3 times a day 6am 2pm and 10pm.  She is also a severe salt waster and
> takes medicine for that also.  You do need to get an appointment with an
> endocrinologist and he/she might be able to run some test to find out if
you
> do have CAH.  Our endocrinologist runs testorone, estriadol, and a CAH 21
> test on my daughter.  She is a normal 8 year old and has no side effects.
If
> you have any other questions, please don't hesitate and you are always
> welcome to email me anytime.  Take care and have a nice weekend
> Christie
>
>
> [This message contained attachments]
>
>
>
> ________________________________________________________________________
> ________________________________________________________________________
>
>
>
> Your use of Yahoo! Groups is subject to http://docs.yahoo.com/info/terms/
>
>

I don't see any attachments.. or whatever.

Roberta Preston
preston@...
----- Original Message -----
From: <adrenal_hyperplasia@yahoogroups.com>
To: <adrenal_hyperplasia@yahoogroups.com>
Sent: Thursday, May 03, 2001 5:03 AM
Subject: [adrenal_hyperplasia] Digest Number 67


> There is 1 message in this issue.
>
> Topics in this digest:
>
>       1. Fwd: CAH and pregnancy
>            From: rarediseases@...
>
>
> ________________________________________________________________________
> ________________________________________________________________________
>
> Message: 1
>    Date: Mon, 30 Apr 2001 19:20:37 EDT
>    From: rarediseases@...
> Subject: Fwd: CAH and pregnancy
>
>
>
>
> [This message contained attachments]
>
>
>
> ________________________________________________________________________
> ________________________________________________________________________
>
>
>
> Your use of Yahoo! Groups is subject to http://docs.yahoo.com/info/terms/
>
>

I am looking for any information regarding the diagnosis and
treatment of  CAH. I have two cousins that have been diagnosed with
this and I have some of the symptoms. Please help me. My doctor tells
me that the reason that I have  increased facial hair, badly thinning
hair on the top, benign intercranial  hypertension, and some others
is that I am an overweight female. HELP! I  don't know where else to
go. I live in Fort Worth and am desparately seeking some answers.

  Thank you for your time,

  Lisa Moran

Hello my name is Jenny H and I had my second daughter on March 16th.
She was diagnosed with severe salt wasting CAH. This came as a total
shocker to my husband and I.We had never heard of it let alone know
we were carriers. The hardest part of it was when she was born Friday
night, they told us she was a boy. Of course my very large family was
there and word spread quickly. Soon afterwards they told us they
couldn't be sure yet what sex are baby was. And since it was the
weekend they couldn't get all the test results until monday. So we
spent all weekend not knowing and avoiding questions from family. Now
that we know things are better of course. The first few days were
hard though. I still have family memebers that think there is
something wrong with Hunter sexually but I think it will ok when they
learn more about this. I am glad that I found these support groups
because there are some things that books and doctors can't tell you.
After learning all I have so far I am thankful that Hunter has this
instead of diabetes where there would be pokes, shots, and special
diet everyday. Most everyone has been supportive for us with the
exception of my mother in law. She is positive that there is no such
gene on her side so she is beside herself trying to figure out how
Jason (my husband) could possibly have it. I don't think she is
trying to be mean she is just one of the people who think there is
something sexually wrong with her. It will probably take a lot of
education for her before she understands. Well basically I just
wanted to introduce myself and get to know other parents who have
been where I am and to learn all I can from you.
                    Jenny H

here is a picture of the medial alert ID (sports medical id). It is perfect
for a baby.

Roberta Preston
preston@...

INDIVIDUAL ORDERS -   Safety Sport I.D. Bands with one information insert
can be purchased for $6.99 each. Additional information inserts are $.25
each. Please follow this link and print the online Order Form to complete
and send to us by postal mail with your payment:


Safety Sport I.D., Inc.
4546 Rutherford Drive
Marietta, GA 30062


please call us at (770) 650-0091

INDIVIDUAL ORDERS -   Safety Sport I.D. Bands with one information insert
can be purchased for $6.99 each. Additional information inserts are $.25
each. Please follow this link and print the online Order Form to complete
and send to us by postal mail with your payment:


Safety Sport I.D., Inc.
4546 Rutherford Drive
Marietta, GA 30062


please call us at (770) 650-0091

Here's the link I have.

http://www.safetysportid.com/

Kim

=====
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