i have a 21 month old son and a 6 week old son what are the chances of
them having CAH and what are some early signs that i should look for in
them?

hello everyone i have a 21 month old daughter with swcah. she is the
joy of my life and a dream come true! we have been through alot with
her she goes to the er atleast every month if not every other. here is
my question... she is very small she is almost 2 and still about the
size of a 1 year old she is also not developing like she should she
still wont walk or talk much has anyone else had development problems?
she was born at 37 weeks at 5lbs she was almost 3 weeks old when we
were told she had swcah she almost didnt make it. she stayed so small
for so long could this have caused the delays?

Hi, I am new to the list.
I have a question.
In my reading, it says that cortisol regulates energy level and sugar
level.
Does this mean that the child, before being treated, can have mood
swings & behavior issues??
Thanks,
Carol from GA

Hi Doug,

 

You e-mail was very touching, you are truly a strong person.  Like you, my wife and I had no Idea that we were both recessive carriers of the CAH gene, and like you had never heard of the condition before. We were shocked when our 3rd daughter was born with CAH (our other 2 are recessive carriers).  Doctors and nurses rarely come across this genetic condition.  We were lucky that the endocrinologist (sp?) was knowledgible and noticed the adrenal crisis and took a proactive approach even prior to the confirming test came back.  She was born full term so stood a good chance of survival.  She is on regular hormone replacement and salt additive she is doing really great.  Our first hospital in NJ was very good (asside from the interns learning about the condition from her (which was probably a good thing).  Childrens hospital of Philadelphia (CHOPs) was wonderful.

 

God Bless

John G   

---

Ahhh...imagining that irresistible "new car" smell?
Check out new cars at Yahoo! Autos.

Hi All,

       My name is Doug.  My wife and I have been married for 10
years.  In 2002 our 1st son Andrew was born at 28 weeks.  The NICU
doctors tested and discovered he had CAH.  They sent away a 2nd test
because they didn't believe the first positive one and were not sure
how to treat it (so much for a level 3 NICU).  All the while he was
in crisis for almost a week.  When they truly realized the situation
they flew him by helicopter to Hershey Pa Medical Center where they
rediagnosed and attempted to treat him.  Too little too late.  He
passed away when he was 1 1/2 months old.  Nothing will ever be able
to rid that grief.  The only good that came from this was that it
made our marriage stronger.
       Who knew that both my wife and I were recessive for CAH.  We
had never heard of it. We even went through genetic screening earlier
in the pregnancy.  Luckily my wife and I had two beautiful children
(boy and a new girl) who both are also recessive for CAH and born
after Andrew passed.  Early testing by Maria @ Cedars Sinai eased our
fears.
       I truly respect all who live with CAH, and am happy that there
are resources such as this group and the CARES Foundation to educate
and link us.

--- In CAHsupport@yahoogroups.com, "orchid32981" <orchid32981@...>
wrote:
>
> My name is Trisha and my 1yr old daughter Maya has salt wasting CAH.
> It's so nice to find others to talk to, most people don't have a clue
> what I'm talking about when I say CAH. Nice to be a part of your
group,
> and have your support.

i went through that and the best feeling is kowing that youre not
alone, this is a crazy trip that u will not wake up from and u learn to
deal with as you go thru it...

ive been thru the ups and the downs and even the i dont knows so if u
ever feel like talking give me a ring...914 751 3321   ari, mom of
elena 3
>

Just saying hi from snowy Ohio.  My daughter is now 13 months, is
walking, weighs 17 lbs, and is sick all the time.  Currently she has a
virus in the form of a rash all over her body.  On her arms and legs
it looks like ringworm, but its not.  She's on Benadryl and Desonide
to soothe the irritation.  She still only takes .5mL of presnisolone,
and will see the endo in March.  Her big sister is 3 and has adapted
to no longer being the only child.

Hope 2007 means healthy babies for everyone!!

I would suggest getting with your endocrinologist asap to make sure
that she is on the proper dosage and also make sure that he has had
at least one case in the past year to two years due to advancements
in medicine and if you would like to speak about some other
complications that might have you worried please feel free to email
me and Mark at markandtcsmith@... we have so much information
about this that you should have.

Teresa Smith











--- In CAHsupport@yahoogroups.com, Trisha Irving <orchid32981@...>
wrote:
>
> Hi monique nice to meet you. Rather than trying to explain salt
wasters, if you go to the CARES Foundation website it explains it,
but basically she looses too much salt in her urine, and can
dehydrate quickly, and may send her into adrenal crisis.
>
> Monique Burkes <motherof1@...> wrote:            Hi, I'm Monique.
My 5 month old has LOCAH.  I, too don't know what the salt-wasting
form of the disease is.
>
>   Welcome!
>   Monique
>
>
>   On 6/22/06, orchid32981 <orchid32981@...> wrote:
My name is Trisha and my 1yr old daughter Maya has salt wasting CAH.
> It's so nice to find others to talk to, most people don't have a
clue
> what I'm talking about when I say CAH. Nice to be a part of your
group,
> and have your support.
>
>
>
>
>
>
>
>
>
>
>
> --
> Monique
>
>
>
>
> ---------------------------------
> Yahoo! Messenger with Voice. Make PC-to-Phone Calls to the US (and
30+ countries) for 2¢/min or less.
>

Hi, I'm Monique.  My 5 month old has LOCAH.  I, too don't know what the salt-wasting form of the disease is.

 

Welcome!

Monique

 

On 6/22/06, orchid32981 <orchid32981@...> wrote:

My name is Trisha and my 1yr old daughter Maya has salt wasting CAH.
It's so nice to find others to talk to, most people don't have a clue
what I'm talking about when I say CAH. Nice to be a part of your group,
and have your support.

--
Monique

My name is Trisha and my 1yr old daughter Maya has salt wasting CAH.
It's so nice to find others to talk to, most people don't have a clue
what I'm talking about when I say CAH. Nice to be a part of your group,
and have your support.

This message is about Human beings, Democracy, UNHCR, Refugees, The Iraqis,
Islam, Kurds, Human rights, Respect, Money, Donations, Angelina Jolie,
Pavarotti, Giorgio Armani, Donors, Peace, History, Campaigns and about you if
you care about these words.

Hi there,

I am SAM, an Iraqi refugee living in Lebanon at the moment; I have spent the
last 10 years of my life as a refugee registered with the UNHCR in Beirut. The
last 4 years, I have spent as an activist for peace and human rights (especially
refugees and asylum seekers) on the Internet; I'm also books author and ebooks
publisher. I have launched many campaigns to improve our situation as refugees
in Lebanon and hopefully bring more understanding to our problems worldwide. I
helped make many changes and improvements at the UNHCR office in Beirut; I used
the Internet as the field for my activities (you can read more about that in my
free ebook 'MY CAMPAIGNS'). All my ebooks are free and could be download from my
sites.

This is my newest campaign, it's about the illegal and humiliating actions of
the UNHCR, who using photos of refugees as banners and human-buttons to collect
money. This is an abuse of the dignity and humanity of the refugees and must
stop immediately and a clear public apology present by The United Nations High
Commissioner for Refugees. My friends, I am talking about the pictures you can
see here: http://www.angelfire.com/al4/un77 Where you can read the rest of this
message as web page.

Also you can read my new campaign 'Urgent, we need smile' here:
http://www.free-webster.com/users/lebanon/smile.html

For more info about UNHCR and life of refugees you can read my free ebooks. I
invite you as fellow humans and members of the world community to support my
campaign by reading my article on my site and see the human-buttons. The
campaign is to support and improve the UNHCR http://www.unhcr.ch especially
after the last scandals in the UN and UNHCR, just for example: The refugees
allege that UNHCR staff is selling most of the food items they are supposed to
be supplied.
"They aren't supplying sufficient food to us because they sell most of the food
items," they allege: http://allafrica.com/stories/200503140214.html

  Here is another example: Burmese Refugees Withdraw Protest Against UNHCR 
http://www.mizzima.com/archives/news-in-2005/news-in-april/12-April05-22.htm

"We make demonstration and fast because the UNHCR office in Cairo did nothing
for our problem..." http://news.bbc.co.uk/2/hi/africa/4440730.stm

Together we will build better world.

You could reach me fast via this form:
http://unhcrlebanon.exactpages.com/email_me.htm and if you like to know more
about me, you can google for my name 'osam altaee'.

Thanks
THE TRUTH WARRIOR
http://k.domaindlx.com/readnow

This is Mark and Teresa again and we have some new information for
parents and those with this sometimes cruel condition. Me and Teresa
have found out that on most occasions it is not nessecery for a
vaginaplasty to be performed and in fact if it is done early it can
be done quite quickly with the aid of dilators thus making it where
all sensations are kept and to those who are looking to have a
clitoris reduction we say do not allow them to do it because the
girl loses way to much of her sexual sensativities. and there will
be scarring which leads to pain due to the scar tissue left behind.
I have not done too much reasearch on the new practices but most I
have talked to would rather have a large clitoris that has feeling
than a somewhat smaller clitoris that is deadened. If there are any
ladies that have any ideas about where we could get smaller dilators
since the "normal" ones are larger than what should be started with,
please let us know because to get the entrance started Teresa is
going to have to use a small sharpie marker to start her treatment.

   God Bless,
  Mark and Teresa Smith

P.S. If anyone has any questions that they would like to ask and do
not feel completely comfortable posting on here feel free to email
us at markandtc@... and we will do any and all reasearch if we
do not know the answers.  Mark

hello everyone. me and my wife are trying to find anyone that have had
to use dilators and find out about their experiances. My wife has CAH
salt-wasting type. If anyone has been through this please let us know,
we are trying to find out the good and bad and which is better dilators
or surgery.       Thanks Mark and Teresa

Hi Joe:

My name is Roberto from Mexico and I really don't know if I suffer
from CAH, but I really need an expert in complex adrenal problems, as
no one has ever told me why I have very high elevated estrogens.

My mom's family (includying my mom) have always suffered from
unexplained fatigue, and now I am wondering if I could have some form
of CAH which produces excessive amounts of estrogens.

I would certainly look at the website that you mentioned and your
input is greatly appreciated specially if you've ever heard of very
high estrogen levels in people with CAH.

I have found several studies from pubmed when they indeed demonstrate
that in CAH, the adrenal glands can secrete large amounts of
estrogens, but I really need an expert, as the only help that I have
gotten is antidepressants and tranquilizers.

Thanks for your help,
Roberto

--- In CAHsupport@yahoogroups.com, Joe T <nuttydad52@y...> wrote:
> Hi Robrto,
>
> My daughter has CAH and we have a wonderful doctor here in
Pittsburgh. I suggest you go the C.A.R.E.S. foundation website. It is
a wonderful organization that helps people with CAH. They have
listings of doctors around the country and you can also call then toll
free and they will help you out in anyway that they can. They are a
Godsend. There address is caresfoundation. org. If I can help you in
anyway let me know. I sponsor a support group here in Western Pa.
>
> Joe
>
> robertillo75 <roberto_meza75@h...> wrote:
> Hi:
>
> Anyone know where can I find doctors with expertise in complex adrenal
> problems like CAH?
>
> Thanks,
> Roberto
>
>
>
>
>
> ---------------------------------
> Yahoo! Groups Links
>
>    To visit your group on the web, go to:
> http://groups.yahoo.com/group/CAHsupport/
>
>    To unsubscribe from this group, send an email to:
> CAHsupport-unsubscribe@yahoogroups.com
>
>    Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.
>
>
> __________________________________________________
> Do You Yahoo!?
> Tired of spam?  Yahoo! Mail has the best spam protection around
> http://mail.yahoo.com

Hi:

Anyone know where can I find doctors with expertise in complex adrenal
problems like CAH?

Thanks,
Roberto

__________________________________________________
Do You Yahoo!?
Tired of spam? Yahoo! Mail has the best spam protection around
http://mail.yahoo.com

Hi:

Anyone know where can I find doctors with expertise in complex adrenal
problems like CAH?

Thanks,
Roberto

For those of you who have been here a while, you know about the
genital development web page at HSC. 3 weeks ago we had an additional
section for CAH go up, and now as of Friday, the hypospadias section
is up.
The site was developed for health care professionals to explain a
child's condition to the parents, and for the parents to be able to
go back and look at it again, and possibly to use it for their family
etc. as well as the patient himself.
I hope that you find it useful.
Please go to the site
www.sickkids.ca/childphysiology
Then go to genital development.
If you haven't been to the site at all before, I suggest that you go
through genital development, then conditions, and that is where you
will find CAH.
Let me know how useful it is for you.
Please also feel free to pass it on, and to share it with others.
Barbara

Just a quick note to let the Canadian subscribers know, that I will
be interviewed on the CBC radio show, "The Current" this week. (It is
on radio 1 from 8:30 am- 9:30 am, and the segment is scheduled for
Wed. They are taping us tomorrow) It will be about inter sexuality.
They plan to have a 1/2 hour interview with an individual who has CAH
and xx chromosomes who was raised as a female but who is now living
as a male, and is not happy about the treatment that occurred as a
child. In the next 1/2 hour They will then interview myself and Dr.
Alice Dreger,  an activist for inter sexuals.
I will be talking about surgery on genitals, parents' feelings and
hopefully coping        ( who knows how the questions will be asked!!)
Those of you not in Canada, may well be able to listen to it via the
internet, at http://www.cbc.ca/thecurrent/index.html
(from this page click on "listen to cbc radio live" and choose the
time zone most appropriate for you.)



Barbara Neilson MSW, Res. Dip. S.W., RSW
Department of Social Work
Hospital for Sick Children
555 University Ave.
Toronto, Ont.
M5G 1X8

Excellent questions.  I would definitely start there.  When we had "our"
surgery, there was noone but the doctor to ask questions to...no support
group to gather information from so we had no idea what to ask.  We were
very fortunate in that the doctors ended up being wonderful!  They explained
things I didn't even realize I needed to know.  Make sure you feel
comfortable with your doctor, that he/she answers any questions you have,
and that your child feels comfortable with the doctor.

Our daughters had a section from the middle removed.  I'm sure the sensation
is gone for them, but at age 15 that is something they're certainly not
going to tell their mother!  LOL!  (They had their surgery at 13 months so
there was no asking then either.)  So I'm no help to you at all.  So sorry.
(Okay, I just asked and one said "I don't know"....typical 15 year old not
wanting to confess to anything and the other, more brazen than her sister
said "there is feeling there".)

Whatever you decide to do, we'll be thinking good thoughts that everything
turns out the way you hope.
Good luck with the surgery.

Angi

----- Original Message -----
From: "Barbara Neilson" <bneilson@...>
To: <CAHsupport@yahoogroups.com>
Sent: Friday, July 16, 2004 1:12 PM
Subject: [CAHsupport] Mark and Teresa...!!!! PLease respond


>
>
> Ariel,
> I have not heard of this technique. I would ask your surgeon the following
> questions.
> 1. What is the technique called?
> 2. How many of these surgeries has he done,(over what time period)  and
> what is the age of the oldest child who has had it done?
> 3. Can he refer you to a peer reviewed journal article where you can read
> about it?
> 4. he has told you the positives with this technique (avoiding sensory
> damage), can he tell you the risks and draw backs.
> Barbara
>
>
> At 11:44 AM 2004-07-16, you wrote:
> >Message: 1
> >    Date: Thu, 15 Jul 2004 17:32:19 -0700 (PDT)
> >    From: "Lauren C." <trinitee_child@...>
> >Subject: Mark and Teresa...!!!! PLease respond
> >
> >my name is ariel and i have a daughter in newyork that is 15 mths old and
> >in aug is about to go through a clitoral reduction ...can u tell me more
> >because i have a doc...who is doing it and says that he will be doing an
> >alltogether different technique where he goes in thru the "back"   and
> >pulls it in...   so thereby according to him  circumventing the whole
> >sensory area...is this similar to what you had done for your daughter
...?
> >please reply....
> >
> >
> >ariel  : mommy of elena   classical salt wasting CAH
> >
> >CAHsupport@yahoogroups.com wrote:
>
>
>
> Barbara Neilson MSW, Res. Dip. S.W., RSW
> Department of Social Work
> Hospital for Sick Children
> 555 University Ave.
> Toronto, Ont.
> M5G 1X8
>
> This e-mail may contain confidential and/or privileged information for the
> sole use of the intended recipient. If you have received this e-mail in
> error please contact the sender and delete all copies.
>
>
>
>
>
> Yahoo! Groups Links
>
>
>
>
>
>

Ariel,
I have not heard of this technique. I would ask your surgeon the following
questions.
1. What is the technique called?
2. How many of these surgeries has he done,(over what time period)  and
what is the age of the oldest child who has had it done?
3. Can he refer you to a peer reviewed journal article where you can read
about it?
4. he has told you the positives with this technique (avoiding sensory
damage), can he tell you the risks and draw backs.
Barbara


At 11:44 AM 2004-07-16, you wrote:
>Message: 1
>    Date: Thu, 15 Jul 2004 17:32:19 -0700 (PDT)
>    From: "Lauren C." <trinitee_child@...>
>Subject: Mark and Teresa...!!!! PLease respond
>
>my name is ariel and i have a daughter in newyork that is 15 mths old and
>in aug is about to go through a clitoral reduction ...can u tell me more
>because i have a doc...who is doing it and says that he will be doing an
>alltogether different technique where he goes in thru the "back"   and
>pulls it in...   so thereby according to him  circumventing the whole
>sensory area...is this similar to what you had done for your daughter ...?
>please reply....
>
>
>ariel  : mommy of elena   classical salt wasting CAH
>
>CAHsupport@yahoogroups.com wrote:



Barbara Neilson MSW, Res. Dip. S.W., RSW
Department of Social Work
Hospital for Sick Children
555 University Ave.
Toronto, Ont.
M5G 1X8

This e-mail may contain confidential and/or privileged information for the
sole use of the intended recipient. If you have received this e-mail in
error please contact the sender and delete all copies.

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There is 1 message in this issue.

Topics in this digest:

1. Re: Thanks
From: "Angela Strong"


________________________________________________________________________
________________________________________________________________________

Message: 1
Date: Thu, 4 Mar 2004 05:52:53 -0500
From: "Angela Strong"
Subject: Re: Thanks

When Amanda and Elizabeth had their surgeries we were in Texas and then Salt
Lake City Utah. The doctors we had were great, but they specialized in
children. Has the endocrinologist made any suggestions as far as surgeons
are concerned? You could always go for the initial consult and ask if there
were any previous patients that were willing to discuss their experiences
with you.

As far as money is concerned, I have no suggestions for you other than to
discuss it with the hospital. Many times they can set up payment options,
write off portions of the bill, etc. My dh is military and so our insurance
picked up most of the bill. You should also check with your insurance
company.

Sorry, that's the best advice I have...anyone else?

Angi


----- Original Message -----
From: "markandtcsmith"
To:
Sent: Friday, February 27, 2004 1:08 AM
Subject: [CAHsupport] Thanks


> Hello, we are so glad to have others in the same boat as us and we
> were wanting to shed a little light on the problems now that we know
> that this is a site to be trusted. Teresa has had a clitoris
> reduction and we do not recomend it to most people because the
> sensations are cut almost all the way so a lot of the pleasure is
> gone. But Teresa also needs a surgery to correct the vaginal opening
> from the size of a pencil lead to the "normal" size. If anyone out
> there knows a trustworthy doctor close to Oklahoma we would greatly
> appreciate it. Also if anyone knows any programs which to get
> finacial help for this(what we have been told could turn into a
> dangerous) problem we would be indebted for life.
>
> Mark and Teresa
>
>
>
>
>
> Yahoo! Groups Links
>
>
>
>
>
>




________________________________________________________________________
________________________________________________________________________



------------------------------------------------------------------------
Yahoo! Groups Links

<*> To visit your group on the web, go to:
http://groups.yahoo.com/group/CAHsupport/

<*> To unsubscribe from this group, send an email to:
CAHsupport-unsubscribe@yahoogroups.com

<*> Your use of Yahoo! Groups is subject to:
http://docs.yahoo.com/info/terms/

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

hey gang i am needing to find a female that is an adult that has
cah i need some insight into some thing if there are any that can
help i'd greatly appreciate it.

             thanks mark.




markandtcsmith@...

My girls didn't go through the early puberty.  Right now we're at the point
of trying to "start" things.  At 15, only one has started her cycle.  The
other is probably just biding her time, but the doctors seem anxious for it
to begin.

I hope everything is starting to get under control for you.

Angi

----- Original Message -----
From: "ppylon" <ppylon@...>
To: <CAHsupport@yahoogroups.com>
Sent: Tuesday, April 20, 2004 2:44 PM
Subject: [CAHsupport] Early Puberty


> Hi!   I am looking for information/support.   I recently adopted a
> daughter with SWCAH.   She is two years old.    I took her to the
> ped endrocrinologist last week because I noticed that some things
> seemed a bit unusual.   She is going through early puberty.    They
> did an ultrasound and confirmed that her uterus is indeed bigger
> (evidently a sign of puberty) and did a bunch of blood tests, which,
> as of today, are still not back.
>
> The doctor said she'd never seen a case of early puberty quite so
> early.    I understand that there are ways to "stop" things but was
> just wanting some input from those who had "been there".
>
> Thanks,
>
> Patty Notch
>
>
>
>
>
> Yahoo! Groups Links
>
>
>
>
>
>

Hi!   I am looking for information/support.   I recently adopted a
daughter with SWCAH.   She is two years old.    I took her to the
ped endrocrinologist last week because I noticed that some things
seemed a bit unusual.   She is going through early puberty.    They
did an ultrasound and confirmed that her uterus is indeed bigger
(evidently a sign of puberty) and did a bunch of blood tests, which,
as of today, are still not back.

The doctor said she'd never seen a case of early puberty quite so
early.    I understand that there are ways to "stop" things but was
just wanting some input from those who had "been there".

Thanks,

Patty Notch