She was diagnosed at the age of 6 weeks, and has been a salt waster since
than also.  Our son is not a carrier, we had him tested as soon as our
daughter was diagnosed.  I know the feeling, but I do sleep so much better
now that she has been able to communicate with me, and she does tell me how
she is feeling.  We have been through all the testing and many hospital
stays, but luckily we have not had a long stay since she got her tonsils out
in 98.

Congrats - email me - preston@...  My husband has a friend in
Indiana that he just visited last month. What wonderful news that she
doesn't need surgery. I guess the SV type usually doesn't need it but it
gets progessive worst if NOT treated.  So you don't she she has CAH or not,
yet. I would recommend the genetic blood testing too. It can confirm the CAH
or whether or not she is a carrier. It is just a blood test taken locally
but sent to Dr. Maria New in New York. We had it done and the insurance paid
for it.
CONGRATS!! (again).... now if you can only get some rest, huh?
----- Original Message -----
From: <adrenal_hyperplasia@yahoogroups.com>
To: <adrenal_hyperplasia@yahoogroups.com>
Sent: Saturday, March 09, 2002 7:39 PM
Subject: [adrenal_hyperplasia] Digest Number 101


> There are 4 messages in this issue.
>
> Topics in this digest:
>
>       1. Re: Digest Number 100
>            From: jenannlynn@...
>       2. Re: Digest Number 100
>            From: chrissyzim@...
>       3. Re: Digest Number 100
>            From: "Jeff and Debbie Doyle" <doyle@...>
>       4. Re: Digest Number 100
>            From: chrissyzim@...
>
>
> ________________________________________________________________________
> ________________________________________________________________________
>
> Message: 1
>    Date: Fri, 8 Mar 2002 13:50:08 EST
>    From: jenannlynn@...
> Subject: Re: Digest Number 100
>
> In a message dated 3/8/2002 9:58:51 AM Central Standard Time,
> adrenal_hyperplasia@yahoogroups.com writes:
>
>
> > How wonderful - a new baby!! Would you believe I even miss being
pregnant!!
> > And I have 7 living children and one in heaven.  Please let me know all
the
> > details!!! I am excited for you.  Where do you live - (you can
personally
> > email if you don't want to post the details for the world or call me -
> > preston@... 703-370-4611.
>
> Hi everyone!  We had our 3rd baby March 5th--Sophia Melissa was born at
4:52
> AM and was 8 lbs 5.8 oz., 21 inches long.  She is beautiful and appears to
be
> healthy--we are still obviously waiting on the tests to come back to see
if
> she has CAH or not like her older sister, but her genitalia looks great,
so
> if she does have it, it looks like we will at least not be needingto worry
> about surgeries or anything.  :)  We are so happy and so excited!  (We
live
> in Indiana, by the way!)
> Jenny
>
>
> [This message contained attachments]
>
>
>
> ________________________________________________________________________
> ________________________________________________________________________
>
> Message: 2
>    Date: Fri, 8 Mar 2002 14:17:01 EST
>    From: chrissyzim@...
> Subject: Re: Digest Number 100
>
> Hello Jenny,
> I live in Indiana also, I have a soon to be 9 yo daughter with CAH
w/severe
> salt wasting.  She is on Cortef, and fluorinef, and in the past year has
> started Peds Lupron Peds shot once a month.  She is going to be going into
> surgery for reconstruction in the next year or so, hopefully later.  So
that
> would be her only surgery needed for the time being.  I have a son who is
> going to be 11, but is not a carrier.  We had him tested as soon as my
> daughter was diagnosed.  Well I saw your note and saw that you were from
> Indiana also, and congrats on your new baby.  Take care and have a great
day.
>  Keep in touch
> Christie
>
>
> ________________________________________________________________________
> ________________________________________________________________________
>
> Message: 3
>    Date: Sat, 9 Mar 2002 08:01:15 -0600
>    From: "Jeff and Debbie Doyle" <doyle@...>
> Subject: Re: Digest Number 100
>
> What is Peds Lupron shot for?  I have a almost 8 yr. old w/CAH who is also
> on florinef & cortef.  She had her surgeries done at 3 mos & 18 mos.  Just
> curious as to what Peds Lubron is.
> ----- Original Message -----
> From: <chrissyzim@...>
> To: <adrenal_hyperplasia@yahoogroups.com>
> Sent: Friday, March 08, 2002 1:17 PM
> Subject: Re: [adrenal_hyperplasia] Digest Number 100
>
>
> > Hello Jenny,
> > I live in Indiana also, I have a soon to be 9 yo daughter with CAH
> w/severe
> > salt wasting.  She is on Cortef, and fluorinef, and in the past year has
> > started Peds Lupron Peds shot once a month.  She is going to be going
into
> > surgery for reconstruction in the next year or so, hopefully later.  So
> that
> > would be her only surgery needed for the time being.  I have a son who
is
> > going to be 11, but is not a carrier.  We had him tested as soon as my
> > daughter was diagnosed.  Well I saw your note and saw that you were from
> > Indiana also, and congrats on your new baby.  Take care and have a great
> day.
> >  Keep in touch
> > Christie
> >
> >
> >
> >
> > Your use of Yahoo! Groups is subject to
http://docs.yahoo.com/info/terms/
> >
> >
> >
>
>
>
> ________________________________________________________________________
> ________________________________________________________________________
>
> Message: 4
>    Date: Sat, 9 Mar 2002 10:04:43 EST
>    From: chrissyzim@...
> Subject: Re: Digest Number 100
>
> Hello,
> Peds lupron depot shot is used to slow the process of puberty.  My
daughter
> has not had any surgeries yet and she does need surgery but they are
trying
> to wait.  She was starting to advance in her puberty stage.  Everyone take
> care and have a beautiful day.
> Christie
>
>
> [This message contained attachments]
>
>
>
> ________________________________________________________________________
> ________________________________________________________________________
>
>
>
> Your use of Yahoo! Groups is subject to http://docs.yahoo.com/info/terms/
>
>

Family Workshop on

Congenital Adrenal Hyperplasia


Please come to a CAH Family Workshop hosted by the CARES Foundation Inc. We
give special thanks to the Texas Department of Health, Newborn Screening
Department and to Texas Children's Hospital for their support of this event.

When: Saturday, April 27th

Time: 1:00pm to 5:00pm

Where: Meyer Building @ 1919 S. Braeswood, Houston, TX (Major cross street
is Greenbriar)

Guest Speakers:

Maria I. New, M.D.

Professor and Chairman, Department of Pediatrics
Chief, Division of Pediatric Endocrinology

Dr. New is world renown for her work in the area of CAH.

Sheila Gunn, M.D.

Assistant Professor, Diabetes and Endocrine Center at Texas Children's
Hospital



Sheri Berenbaum, Ph.D., Professor of Psychology at Penn State University,
CAH researcher, editor of the journal Behavioral Genetics and member of the
North American Task Force on Intersexuality.

Topics:

Prenatal therapy

New advancements in CAH treatment

Research for a cure

General treatment of CAH

The Psychological Aspects of CAH

Parent Question and Answer

Parent discussion (Networking)

(Topics may vary)

It will be held in the conference rooms on the 1st floor of the Meyer
Building. Parking is available in the security garage across from the street
from the Meyer Building. You only need to notify the guard that you are
there for the CAH Conference and sign in. There is NO cost for the
conference or the parking.

We would love to have your support. The doctors have been gracious to
provide their time at no cost to us so that we can bring you information,
education and support. Our goal is to form a network of Texas families that
we can draw support from as our children grow and we are presented with
question and problems. We hope you can attend. Light refreshments will be
served.


Babysitting will not be available, so please make arrangement. For out of
town families that would like information on where to stay, please contact
Sandra Billings at the phone number below.




RSVP to Sandra Billings either by returning this form to Sandra Billings
17410 Crosscove Ct. Houston, TX 77095, by email to billprop@... or by
phone at (281) 861-6043.

(Please, send back this RSVP even if you're not coming as we are trying to
keep our database updated and like to confirm that we have the correct
addresses. We are also starting to collect everyone's emails so that we can
add you to our email list for more events and our quarterly newsletters-
Thanks!)

----- Original Message -----
From: <adrenal_hyperplasia@yahoogroups.com>
To: <adrenal_hyperplasia@yahoogroups.com>
Sent: Saturday, March 09, 2002 7:39 PM
Subject: [adrenal_hyperplasia] Digest Number 101


> There are 4 messages in this issue.
>
> Topics in this digest:
>
>       1. Re: Digest Number 100
>            From: jenannlynn@...
>       2. Re: Digest Number 100
>            From: chrissyzim@...
>       3. Re: Digest Number 100
>            From: "Jeff and Debbie Doyle" <doyle@...>
>       4. Re: Digest Number 100
>            From: chrissyzim@...
>
>
> ________________________________________________________________________
> ________________________________________________________________________
>
> Message: 1
>    Date: Fri, 8 Mar 2002 13:50:08 EST
>    From: jenannlynn@...
> Subject: Re: Digest Number 100
>
> In a message dated 3/8/2002 9:58:51 AM Central Standard Time,
> adrenal_hyperplasia@yahoogroups.com writes:
>
>
> > How wonderful - a new baby!! Would you believe I even miss being
pregnant!!
> > And I have 7 living children and one in heaven.  Please let me know all
the
> > details!!! I am excited for you.  Where do you live - (you can
personally
> > email if you don't want to post the details for the world or call me -
> > preston@... 703-370-4611.
>
> Hi everyone!  We had our 3rd baby March 5th--Sophia Melissa was born at
4:52
> AM and was 8 lbs 5.8 oz., 21 inches long.  She is beautiful and appears to
be
> healthy--we are still obviously waiting on the tests to come back to see
if
> she has CAH or not like her older sister, but her genitalia looks great,
so
> if she does have it, it looks like we will at least not be needingto worry
> about surgeries or anything.  :)  We are so happy and so excited!  (We
live
> in Indiana, by the way!)
> Jenny
>
>
> [This message contained attachments]
>
>
>
> ________________________________________________________________________
> ________________________________________________________________________
>
> Message: 2
>    Date: Fri, 8 Mar 2002 14:17:01 EST
>    From: chrissyzim@...
> Subject: Re: Digest Number 100
>
> Hello Jenny,
> I live in Indiana also, I have a soon to be 9 yo daughter with CAH
w/severe
> salt wasting.  She is on Cortef, and fluorinef, and in the past year has
> started Peds Lupron Peds shot once a month.  She is going to be going into
> surgery for reconstruction in the next year or so, hopefully later.  So
that
> would be her only surgery needed for the time being.  I have a son who is
> going to be 11, but is not a carrier.  We had him tested as soon as my
> daughter was diagnosed.  Well I saw your note and saw that you were from
> Indiana also, and congrats on your new baby.  Take care and have a great
day.
>  Keep in touch
> Christie
>
>
> ________________________________________________________________________
> ________________________________________________________________________
>
> Message: 3
>    Date: Sat, 9 Mar 2002 08:01:15 -0600
>    From: "Jeff and Debbie Doyle" <doyle@...>
> Subject: Re: Digest Number 100
>
> What is Peds Lupron shot for?  I have a almost 8 yr. old w/CAH who is also
> on florinef & cortef.  She had her surgeries done at 3 mos & 18 mos.  Just
> curious as to what Peds Lubron is.
> ----- Original Message -----
> From: <chrissyzim@...>
> To: <adrenal_hyperplasia@yahoogroups.com>
> Sent: Friday, March 08, 2002 1:17 PM
> Subject: Re: [adrenal_hyperplasia] Digest Number 100
>
>
> > Hello Jenny,
> > I live in Indiana also, I have a soon to be 9 yo daughter with CAH
> w/severe
> > salt wasting.  She is on Cortef, and fluorinef, and in the past year has
> > started Peds Lupron Peds shot once a month.  She is going to be going
into
> > surgery for reconstruction in the next year or so, hopefully later.  So
> that
> > would be her only surgery needed for the time being.  I have a son who
is
> > going to be 11, but is not a carrier.  We had him tested as soon as my
> > daughter was diagnosed.  Well I saw your note and saw that you were from
> > Indiana also, and congrats on your new baby.  Take care and have a great
> day.
> >  Keep in touch
> > Christie
> >
> >
> >
> >
> > Your use of Yahoo! Groups is subject to
http://docs.yahoo.com/info/terms/
> >
> >
> >
>
>
>
> ________________________________________________________________________
> ________________________________________________________________________
>
> Message: 4
>    Date: Sat, 9 Mar 2002 10:04:43 EST
>    From: chrissyzim@...
> Subject: Re: Digest Number 100
>
> Hello,
> Peds lupron depot shot is used to slow the process of puberty.  My
daughter
> has not had any surgeries yet and she does need surgery but they are
trying
> to wait.  She was starting to advance in her puberty stage.  Everyone take
> care and have a beautiful day.
> Christie
>
>
> [This message contained attachments]
>
>
>
> ________________________________________________________________________
> ________________________________________________________________________
>
>
>
> Your use of Yahoo! Groups is subject to http://docs.yahoo.com/info/terms/
>
>

What is Peds Lupron shot for?  I have a almost 8 yr. old w/CAH who is also
on florinef & cortef.  She had her surgeries done at 3 mos & 18 mos.  Just
curious as to what Peds Lubron is.
----- Original Message -----
From: <chrissyzim@...>
To: <adrenal_hyperplasia@yahoogroups.com>
Sent: Friday, March 08, 2002 1:17 PM
Subject: Re: [adrenal_hyperplasia] Digest Number 100


> Hello Jenny,
> I live in Indiana also, I have a soon to be 9 yo daughter with CAH
w/severe
> salt wasting.  She is on Cortef, and fluorinef, and in the past year has
> started Peds Lupron Peds shot once a month.  She is going to be going into
> surgery for reconstruction in the next year or so, hopefully later.  So
that
> would be her only surgery needed for the time being.  I have a son who is
> going to be 11, but is not a carrier.  We had him tested as soon as my
> daughter was diagnosed.  Well I saw your note and saw that you were from
> Indiana also, and congrats on your new baby.  Take care and have a great
day.
>  Keep in touch
> Christie
>
>
>
>
> Your use of Yahoo! Groups is subject to http://docs.yahoo.com/info/terms/
>
>
>

Hello Jenny,
I live in Indiana also, I have a soon to be 9 yo daughter with CAH w/severe
salt wasting.  She is on Cortef, and fluorinef, and in the past year has
started Peds Lupron Peds shot once a month.  She is going to be going into
surgery for reconstruction in the next year or so, hopefully later.  So that
would be her only surgery needed for the time being.  I have a son who is
going to be 11, but is not a carrier.  We had him tested as soon as my
daughter was diagnosed.  Well I saw your note and saw that you were from
Indiana also, and congrats on your new baby.  Take care and have a great day.
  Keep in touch
Christie

How wonderful - a new baby!! Would you believe I even miss being pregnant!!
And I have 7 living children and one in heaven.  Please let me know all the
details!!! I am excited for you.  Where do you live - (you can personally
email if you don't want to post the details for the world or call me -
preston@... 703-370-4611.

Roberta
----- Original Message -----
From: <adrenal_hyperplasia@yahoogroups.com>
To: <adrenal_hyperplasia@yahoogroups.com>
Sent: Tuesday, March 05, 2002 11:42 AM
Subject: [adrenal_hyperplasia] Digest Number 99


> There is 1 message in this issue.
>
> Topics in this digest:
>
>       1. Re: Digest Number 98
>            From: jenannlynn@...
>
>
> ________________________________________________________________________
> ________________________________________________________________________
>
> Message: 1
>    Date: Sun, 3 Mar 2002 10:05:01 EST
>    From: jenannlynn@...
> Subject: Re: Digest Number 98
>
> In a message dated 3/3/2002 7:26:16 AM Central Standard Time,
> adrenal_hyperplasia@yahoogroups.com writes:
>
>
> > how are you?  did you have the baby? My baby born in August is doing
> > fine... Anthony... he is teething and crawling... eating like a
> > champ!!
>
> Glad to hear that Anthony is doing well!
> I am still waiting!  My due date is March 11th--don't know yet if it is
boy
> or girl or if the baby has CAH or not, and the suspense on both is killing
> me.  :)
> They plan to induce me this week (probably Tues. or Wed.) if the baby
hasn't
> come on it's own by then (afraid the baby will get too big for me
otherwise).
>  I feel like I have been in labor for over a month now though, and I am
READY
> to have that baby!
> Jenny
>
>
> [This message contained attachments]
>
>
>
> ________________________________________________________________________
> ________________________________________________________________________
>
>
>
> Your use of Yahoo! Groups is subject to http://docs.yahoo.com/info/terms/
>
>

--- In adrenal_hyperplasia@y..., jenannlynn@A... wrote:
> Congrats Roberta!!!!  :)  That is fabulous to hear!  How are you
recovering?
>
> We just recently learned we are expecting a third baby in March
now--it was a
> suprise!  :)
> Jenny

how are you?  did you have the baby? My baby born in August is doing
fine... Anthony... he is teething and crawling... eating like a
champ!!

Dear Friends,
CARES Foundation, Inc. is proud to send you its first newsletter for
individuals and families affected by CAH. I hope you will enjoy it. If you
have the email addresses of other CAH families or adults, please forward
this on to them and hopefully they will email us back with their information
so we can put them on our mailing list.
If you do not wish to receive any further emails from CARES Foundation Inc.,
please send a reply email to us with the words "Unsubscribe" in the subject
line and we will delete your name.
Thank you and Happy Holidays,
Kelly R. Leight, Executive Director




Congenital Adrenal hyperplasia Research, Education and Support Foundation,
Inc.

Kelly R. Leight, Executive Director
P.O. Box 264, Short Hills, New Jersey 07078
URL: www.caresfoundation.org
NOTE NEW EMAIL ADDRESS: Kelly@...

Phone: 973-912-3895 (in New Jersey)

Toll Free: 1-866-227-3737



Our First Newsletter is Here!

December 2001
Happy Holidays to All!









The Lecture/ Support Group Meeting Was a Huge Success!



On November 14, 2001, CARES Foundation, Inc., in conjunction with Dr. Maria
New and New York Presbyterian Hospital-Weill Cornell Medical Center, hosted
its first lecture/support group meeting for CAH families. Dr. New presented
the findings of her newly published study on prenatal therapy for mothers at
risk of giving birth to a CAH virilized females.  For discussion of that
study, please see article below. Dr. Susan Baker, the psychologist at
Cornell who works with Dr. New and counsels many CAH patients and their
families, also presented her findings on a study of frequently asked
questions by adults who suffer from CAH and non-classical CAH.  Most
affected individuals were concerned about treatment options and side effects
of medications and the disease. Dr. Baker is preparing a booklet that will
address the most frequently asked questions. Dr New also discussed her gene
therapy research that holds the promise of a potential "cure" for CAH. CARES
Foundation, Inc. presented Dr. New with a check representing its first
research grant for the Gene Therapy program at Cornell-Weill Medical Center
to support Dr. New's research.



The lecture was videotaped. Copies will be available for a small fee from
CARES Foundation in mid-December.



The best part of the evening for me (Kelly), however, was meeting the many
families who attended. There were several whom I had spoken to over the
phone or corresponded with, but I was finally able to put a face to the
name. People brought photos of their beautiful children and we shared our
experiences. One couple attended who had just given birth to a CAH daughter
13 days prior. Their daughter was still in the hospital. Parents who had
been through the same experience were able to reassure them that their
daughter would be fine. It was a wonderful, heartwarming, supportive and
educational experience for me and I hope for the others who attended. I hope
many more will be able to attend our next lecture/support group meeting on
February 27th.



Our Next Lecture/ Support Group Meeting with Dr. New is Scheduled for
February 27th! Save the Date!



On February 27th, 2002, CARES Foundation, Inc. will be sponsoring another
lecture and support group meeting with Dr. New at NY Presbyterian
Hospital -Weill Cornell Medical Center. The lecture will address issues of
concern for non-classical CAH individuals and families, but most topics will
be of interest to classical CAH patients as well. Since Dr. New ran out of
time at the last lecture and was unable to discuss Growth Hormone therapy,
we hope she will address this subject at this lecture. Please mark your
calendars and plan to come! An Email alert with details will be sent out
closer to the event.



New Study By Dr. Maria New on the Benefits and Safety of Prenatal Therapy



In the December edition of the Journal Of Clinical Endocrinology and
Metabolism, Dr. New will be publishing her study Prenatal Diagnosis for
Congenital Adrenal Hyperplasia in 532 Pregnancies. Her study confirms the
safety and efficacy of prenatal treatment for expectant mothers and their
babies at risk for virilization from CAH. It shows no apparent risk to child
(CAH-affected or not) or mother.



The treatment involves the pregnant mother taking dexamethasone starting at
or before the 9th week of pregnancy to suppress the excess adrenal androgen
secretion and prevent virilization should the fetus be a CAH-affected
female. Once diagnosis is made via chorionic villus sampling or
amniocentesis and the fetus is an unaffected female or a male, the treatment
is discontinued. If the fetus is diagnosed as an affected female, the
treatment is continued through the remainder of the pregnancy. The mother
must be carefully followed by during the pregnancy. The study shows that
there were no real differences in the symptoms during pregnancy between
those treated with the dexamethasone and those untreated, except that
additional weight gain (which was lost after pregnancy), edema, and striae
(stretch marks) were somewhat greater in the treated group. There were no
lasting side effects in the fetuses proving that the treatment is safe. Most
importantly, of those mothers who began the treatment at or before the 9th
week of pregnancy, the amount of virilization was substantially reduced or
in many cases completely eliminated. The vast majority of female
CAH-affected babies whose mothers were treated with Dex beginning by the 9th
week of the pregnancy and completed the course of treatment did not require
any surgery for virilization.  The prenatal treatment spares the female the
consequences of genital ambiguity, potential surgery and possible sex
misassignment.



We at CARES Foundation, Inc. thank Dr. Maria New for her groundbreaking
research on prenatal therapy that will improve the quality of life for so
many CAH affected females.



Update on Newborn Screening



Beginning on January 1, 2002, a number of states will add CAH to their
newborn screening programs including Oregon, Virginia, Arizona and Missouri.
Arizona and Oregon will be doing a 2-part screen that detects a greater
number of simple virilizers and non-classicals than the standard screen. In
April, 2002 New York will finally begin screening for CAH, and the state
will be doing genotyping as an adjunct to the regular testing. This will
help to determine the type of CAH affecting the child. Vermont just approved
adding CAH screening, but has no set start date finalized. We also applaud
the Health Departments of Maryland, Mississippi, New Jersey, Delaware and
Maine that began CAH newborn screening in the last 6 months.  With the
addition of Vermont, the number of states that screen for CAH at birth is
34!

Dr. Piero Rinaldo of the Mayo Clinic is completing his research on the
usefulness of Tandem Mass Spectrometry technology in CAH screening and its
ability to eliminate up to 95% of all false positive results, as well as its
ability to detect a greater number of simple virilizers and non-classicals.
We are looking forward to seeing the results of his research.

In addition, NeoGen Screening, Inc. a private laboratory in Pennsylvania is
doing research on genotyping in CAH newborn screening. This would also
provide better accuracy in newborn screening for CAH.



CARES Foundation's Advocacy Efforts For Expanded Newborn Screening



CARES Foundation is stepping up its efforts to advocate for CAH newborn
screening in all states. Unfortunately, many states still do not screen for
CAH at birth despite its life-saving benefits. That means that all classical
CAH male babies and those females who are so virilized they are sent home as
males born in those states are at risk of dying or suffering a traumatic and
life-threatening adrenal crisis.



For more information about CAH newborn screening, please visit the CARES
Foundation web site at http://www.caresfoundation.org/nbs.html.



In California, we are working with the March of Dimes, which is making CAH
newborn screening one of its top legislative priorities. I need California
residents to help CARES Foundation advocate for the addition of CAH
screening to the California newborn screening program. It involves letter
writing, making telephone calls to legislators, reaching out to and speaking
to the media, speaking at hearings if necessary, and taking advantage of any
personal contacts we might have. It would be especially helpful if someone
has a connection to the Governor of California, as he is the person holding
things up right now.

We should also get our California pediatric endocrinologists, OB/GYNs and
pediatricians to get involved. Ask them to write letters and make phone
calls.



I need one person to act as the State coordinator, who will work closely
with the March of Dimes and coordinate the efforts of the other parents.
Beyond that I just need lots of "noise makers" It may take a while, but if
we can make enough noise, they can't ignore us.

Also, any parents in any state who have, unfortunately, lost their child
because they were not identified as having CAH in time, please contact me.
If you would be willing to speak out about your tragedy, you might be able
to help save the life of another family's child.

We have parents in Ohio and Utah coordinating the efforts there as well, but
they need more help. If you live in a state that does not screen for CAH at
birth and you are willing to work on advocacy, your efforts would be truly
helpful. CARES Foundation will instruct you on advocacy if needed.



Please email or call Kelly Leight if you can help out at
Kelly@... or  call 1-866-227-3737 (outside NJ) or in NJ -
973-912-3895.



Kelly Leight To Speak as A Panel Member at Robert Wood Johnson Medical
School on January 8, 2002.



Kelly Leight has been invited to participate in panel discussion of the
issues and controversy surrounding surgical options for children born with
ambiguous genitilia before the medical students and faculty at Robert Wood
Johnson Medical School in New Brunswick, New Jersey. The other panelists
include Dr. William Reiner from Johns Hopkins, Dr. Nina Williams, a
therapist who counsels women with CAH, and several CAH adult women.  Kelly
Leight's presentation will focus on the necessity for support for parents
and the importance of sensitivity to the concerns of parents. The panel
discussion is from 9-11 am at the medical school. The lecture is not open to
the public, but if you wish to attend, contact Kelly Leight, and she will
make entry arrangements for you.



Volunteers Needed!



Please Contact Kelly Leight if you can help with any of the following:

We need someone to work on getting the charity registrations in key states.
This involves phone calls (out of state) and sending the needed documents to
the states.

We need someone to work with another NY state mom to organize a family day
event in the spring. Soup to nuts--do everything. Call Susan Donohoe at
845-265-3306 if you can help with Family Day.

Susan is also coordinating the creation of a video about living with CAH. If
you have special skills related to video and film, please call her as well.

We need someone to put together our newsletter (semi or bi annual) with
updates via email. I also need written contributions from parents on topics
of interest.

We need someone to coordinate fundraising activities and someone to write
some grants. Contacts with drug companies and medical insurance companies
help.

Once all of our materials are together, we will need someone to mail them
out whenever we get a request. We also need people to bring brochures to
their endocrinologists' offices.

We need a national newborn screening coordinator--someone to keep track of
CAH screening in the states.

Kindly specify exactly which of the above projects you are willing to help
with.





About CARES Foundation, Inc.



Two years ago, our daughter, Alyssa, was diagnosed with a genetic disorder
called non-classical Congenital Adrenal Hyperplasia (CAH). As we attempted
to research the disease, we found that there were no active support
organizations for families and affected individuals and few resources for
learning about the disease despite the fact that the non-classical form of
the CAH is the most common genetic disease identified to date. My husband
Adam and I felt that we could make a difference in the lives of those
affected by all forms of CAH and their families and could help to publicize
the non-classical form of the disease in the most affected ethnic groups.
So, this past year, we formed CARES Foundation, Inc. (Congenital Adrenal
hyperplasia Research Education and Support), a non-profit 501c(3)
organization. Its purpose is to educate the public and physicians about all
forms of Congenital Adrenal Hyperplasia, its symptoms, diagnostic protocols,
treatment, genetic frequency, the necessity for early intervention and
benefits of newborn screening. It is also dedicated to providing support and
information to affected individuals and their families. We also will provide
medical scholarships to those in need and donate funds to CAH-related
research. CARES Foundation, Inc. can only continue its work through your
tax-exempt donations and support.

Thank You,

Kelly R. Leight, Founder and Executive Director



Please Consider a Donation to CARES Foundation or Help with Fundraising



This holiday season, please consider  making a tax deductible contribution
to CARES Foundation, Inc.  So far, all expenses of CARES Foundation have
been subsidized by the Executive Director, Kelly Leight and her husband,
Adam, with the exception of a small grant from the PerkinElmer-Wallac
company, a company that produces newborn screening equipment. A donation
form is included in this newsletter. We have many plans in the works for the
future, including a video on the subject of Living With CAH aimed at
families with newly diagnosed children; printing of brochures and purchasing
of educational materials for families; outreach and educational efforts; a
family day event for the spring to be held in the NYC vicinity; the NYC
lecture/ support group meeting set for February and similar events to be
held in Maryland, California and Texas; preparation of a nationwide list of
pediatric endocrinologists with experience in treating CAH; continued
advocacy for CAH newborn screening; grants for CAH related research; and
medical scholarships for families in need of specialist care. CARES
Foundation, Inc. has been chosen to be the featured support organization for
the March 2002 issue of Exceptional Parent Magazine.





CARES Foundation Accomplishments for 2001:



Organization Established 3/01;

Tax Exempt status --501(c)3 received from IRS 8/01;

Grant received from PerkinElmer-Wallac 8/01;

  Played a major role in the expansion of newborn screening in New Jersey
including CAH;

Contributed to two New York Times articles on Early Puberty written by Gina
Kolata;

Featured in CBS Evening News Segment on Early Puberty;

Featured in New Jersey Jewish News article on Non-classical CAH and its
prevalence in the Jewish population;

Establishment of CARES Foundation web site, www.caresfoundation.org 4/01;

Organizational Board Member of Tyler For Life Foundation (advocacy group for
newborn screening);

Pending memberships in NORD and Genetic Alliance;

Lecture and Support Group meeting 11/14/01;

First CARES Foundation Research Grant given to CAH Gene Therapy Program at
NY Presbyterian Hospital-Weill Cornell Medical Center 11/01;

First Newsletter 12/01.





CARES Foundation, Inc cannot continue these efforts without financial
support from you. Please consider giving generously.



You might also wish to assist in fundraising.  Adam and Kelly Leight will be
putting a fundraising letter in all of their Holidays cards this year and we
hope you will consider doing the same. Here is a form of fundraising letter:



  Dear Family and Friends,

In this holiday season, our family has chosen to support an organization
dear to our hearts. It is a relatively new organization, so any gift you can
make would be particularly meaningful. CARES Foundation, Inc. (Congenital
Adrenal hyperplasia Research Education and Support) is a non-profit 501c(3)
organization dedicated to educating the public and physicians about all
forms of Congenital Adrenal Hyperplasia, its symptoms, diagnostic protocols,
treatment, genetic frequency, the necessity for early intervention and
benefits of newborn screening. It is also dedicated to providing support and
information to affected individuals and their families. CARES Foundation,
Inc. can only continue its work through your tax-exempt donations and
support.

As many of you know, [I am] our child[ren], _________, is [are] affected by
a form of Congenital Adrenal Hyperplasia. Congenital Adrenal Hyperplasia is
a family of inherited disorders affecting the adrenal gland. The most common
form is 21-hydroxylase deficiency, which is inherited in severe or mild
forms. The severe form, called Classical CAH (CAH), is usually detected in
the newborn period or in early childhood. The genetic frequency of Classical
CAH is approximately 1 in 15,000 births. The milder form, called
Non-Classical CAH (NCCAH), may cause symptoms at anytime from infancy
through adulthood. Non-Classical CAH is a much more common disorder than
Classical CAH. It affects 1 in 100 in the general population of New York
City and is most common in certain ethnic groups. It affects 1 in 27
Ashkenazi Jews, 1 in 40 Hispanics, 1 in 53 Croatians, and 1 in 300 Italians.
This frequency makes NCCAH the most frequent genetic disorder identified to
date.

Congenital Adrenal Hyperplasia (CAH), in its severest form, is a
life-threatening disorder. It is caused by a defect in the gene coding for
an enzyme, steroid 21-hydroxalase, important to cortisol production and
without which adrenal insufficiency results. Its severest form, called
Classical CAH, carries with it a salt-wasting factor-- an inability to
produce aldosterone, which, if undetected at birth, can lead to adrenal
crisis and death. Frequently, these babies present for urgent medical
attention at a time when they are beyond resuscitation. Classical CAH
children with careful medical care can live a long and normal life. There
are many health issues that families and individuals are presented with
throughout their lives, but the disease can be managed with medication.

Non-Classical CAH (NCCAH), is much more common than Classical CAH.
But-perhaps because it is less severe and harder to recognize than the
classical form of the disease, NCCAH has not received the attention it
deserves as a widespread condition that affects health and quality of life.
Symptoms of NCCAH include: premature puberty, premature adrenarche (manifest
as body odor or pubic hair in young children), abnormal bone aging leading
to rapid growth in early childhood but ultimate short stature, severe acne,
oily hair and skin, and later in life, infertility in men and women. Anxiety
and depression are also common symptoms. These symptoms are treatable with
glucocortiods.

CARES Foundation, Inc. provides many services to the CAH community including
a physician referral service for parents and affected adults, educational
lectures, support groups, maintenance of a web site with many resources, and
providing of free informational materials. It also provides medical
scholarships to needy families for specialist care and grants to medical
institutions for CAH-related research. We hope to expand the services  CARES
Foundation, Inc. offers to the CAH community and its efforts to educate the
public, the medical community and the most affected ethnic groups about
NCCAH. It also supports parent efforts to expand newborn screening programs
to include screening for CAH at birth as it did with great success in
several states this past year.

We ask you to consider supporting CARES Foundation, Inc. and its efforts to
provide these services and support to those affected by this disease. Your
tax deductible contribution to CARES Foundation, Inc. will help the
organization to continue its work.

Happy Holidays to all!

[Your Names]



To our CAH adults and families:

We are trying to create a workable database with the full names and
addresses of the CAH community. Please help us to help you. For many of you,
I only have a first name and email address. You can cut and paste this form
and put it in an email to Kelly Leight at Kelly@...

or call and leave us a message with the information at 1-866-227-3737

Thank you for your help! All information will be kept confidential.



Please tell us the following:

Name ___________________________________________________________________

Address__________________________________________________________________

Telephone number_____________________

email address_________________________

Affected adult______

Child[ren] with CAH and how many_____

Type of CAH:

   Non-classical/late-onset CAH___________

   Salt-Wasting_____________

   Simple Virilizing___________



Please put us on your email alert list_______

Snail mail only________







CARES Foundation, Inc.

(Congenital Adrenal hyperplasia Research, Education and Support)

Kelly R. Leight, Executive Director

P.O. Box 264, Short Hills, New Jersey 07078

URL: www.caresfoundation.org

email: Kelly@...

Phone: 973-912-3895 (in New Jersey)

Toll Free: 1-866-227-3737



NAME:___________________________________________________________



ADDRESS:________________________________________________________



TELEPHONE:______________________________________________________

EMAIL:__________________________________________________________





I/we would like to learn more about CARES Foundation, Inc and CAH.___

Please put me on the CARES Foundation, Inc. email list.____

Your Tax Deductible Contribution:

$1000___       $100____

$500____       $50_____

250_____       $OTHER_________

Matching Gift Program Available? Name of
Company:____________________________



Check enclosed $________



Please charge to my credit card. MC____   VISA____  AMEX______

Number_______________________      Exp. date________________



Signature (for credit card
authorization)________________________________________



From Our Family To Yours--Our Best Wishes of the Season
And a Happy, HEALTHY New Year!

Kelly, Adam, Josh and Alyssa Leight













----- Original Message -----
From: <adrenal_hyperplasia@yahoogroups.com>
To: <adrenal_hyperplasia@yahoogroups.com>
Sent: Monday, December 03, 2001 1:23 PM
Subject: [adrenal_hyperplasia] Digest Number 96


> There is 1 message in this issue.
>
> Topics in this digest:
>
>       1. Re: Digest Number 95
>            From: "preston" <preston@...>
>
>
> ________________________________________________________________________
> ________________________________________________________________________
>
> Message: 1
>    Date: Sun, 2 Dec 2001 12:24:28 -0500
>    From: "preston" <preston@...>
> Subject: Re: Digest Number 95
>
> here is a search on the web = results of hypospadius
> I hope it helps
>
> eBility - Hypospadius Repair
> Read about this abnormality of the penis, repair, risks, and recovery.
> http://www.ebility.com/ency/article/003000.htm
>
>
> Medline plus - Hypospadius
> Read about this abnormality of the penis where the meatus (opening) does
not
> reach the end.
> http://www.nlm.nih.gov/medlineplus/ency/imagepage/9429.htm
>
> WEB PAGES
>
>
> Re: Re: Re: Undescended testicles with Hypospadius
> Re: Re: Re: Undescended testicles with Hypospadius [ Follow Ups ] [ Post
> Followup ] [ Preemie-l Discussion Forum ] Posted by William E. Torian on
Wed
> Jul 18 23:00:33 2001: In Reply to: Re: Re: Undescended testicles with
> Hypospadius posted by Purnima
> http://home.vicnet.net.au/~garyh/preemie_forum/messages/1331.html
>
>
> Re: Re: Undescended testicles with Hypospadius
> Re: Re: Undescended testicles with Hypospadius [ Follow Ups ] [ Post
> Followup ] [ Preemie-l Discussion Forum ] Posted by Purnima on May 29,
1999
> at 10:34:17: In Reply to: Re: Undescended testicles with Hypospadius
posted
> by Karin on May 28, 1999 at
> http://home.vicnet.net.au/~garyh/preemie_forum/old-messages/8035.html
>
>
> MEDWEB QUESTION: HYPOSPADIUS
> Back to Q and A page Back to recently asked questions QUESTION: I am
> 28-years-old and I was born with hypospadius. The condition I had was that
> the testicles were split in the middle and the hole to pass urine was
formed
> between them. Though my pare
> http://www.hvmedweb.com/mw1/qanda/hypospadius_stellato.htm
>
>
> WebMD/Lycos - Article - Hypospadius
> With Lycos, WebMD offers a comprehensive online health resource. Whether
you
> want to get information about a medical condition, learn more about
leading
> a healthier lifestyle, or talk to others with similar health concerns,
WebMD
> is the place to go.
> http://webmd.lycos.com/content/asset/adam_imagepage_9429
>
>
> Johns Hopkins - Brady Urological Institute- Innovative Surgical Techniques
> Study extols the advantages of this type of kidney transplant, with info
on
> techniques, patient selection and detailed drawings of the surgery.
> http://prostate.urol.jhu.edu/clinic/nephrectomy
>
>
> Pediatric Urology
> Pediatric Urologists treat problems of the genitalia and urinary tract
(such
> as hypospadius, undescended testicle, hydrocele, enuresis, hydronephrosis,
> and vesicoureteral reflux) in infants, children and adolescents.
> http://www.pedisurg.com/urology.htm
>
>
> Medical Domain Names For Sale or Lease
> MedicalDomains.com -A vast selection of medically oriented domains for
sale
> or lease. Domain Names for sale. Medical related Domain Names Specializing
> in Health Domains for Sale. Also offering an extensive line of top level
> domains, including Medica
> http://www.plasticsurgerydirect.com/links-ps/HypLink.html
>
>
> http://www.godubai.com/aldowali/urology.html
> -Select- Opthalmology General Surgery Plastic Surgery ENT Urology
> Orthopaedics Gynaelogy Cardiology Dentistry Radiology Intensive Care Unit
> Dermatology Paediatric Laboratory X-Ray This department benefits from
> resectascope equipment for the
> http://www.godubai.com/aldowali/urology.html
>
>
> Main
> Pediatric Urology Children's Hospital of Wisconsin General considerations
> About the Staff Pediatric Clinic How To Get To The ClinicReturn to Urology
> Clinic Page Pediatric Urology A Service of Children's Hospital of
Wisconsin
> We offer diagnostic
> http://www.mcw.edu/urology/Main.html
>
>
>
> Medical College of Georgia-Pediatric Urology
> Medical College of Georgia, Georgia's Health Sciences University, is
located
> in Augusta, Georgia
> http://cmc.mcg.edu/surg_services/urology
>
>
> H Index
> A B C D E F G H I J K L M N O P Q R S T U V W X Y Z H HANDICAPPED CHILDREN
> Please click on the "box below" to view the following topics. H Part I
> HADDAD SYNDROME HAIRY CELL LEUKEMIA HALLERMAN-STREIFF SYNDROME HEAD
> INJURY/HEADACHE HEALTH HEALTH AND
> http://www.childhealthinfo.com/hindex.htm
>
>
> 6461: Fragile X syndrome associated with birth defects.
> Fragile X syndrome associated with birth defects. L.E. Rhee, S.L. Hatcher,
> K.M. Robb and D.R. Towner. UC Davis Health System, Sacramento, California.
> We report further evidence that fragile X syndrome might be associated
with
> birth defects. A know
> http://www.faseb.org/ashg97/f6461.html
>
>
> PTN Glossary-Diagnosis
> The Pull-thru Network Glossary Diagnosis This web page is NOT a list of
> "problems to expect", rather, it is a compilation of medical problems
> (associated with "pull through" surgeries or not) experienced by members
of
> the Pull-Thru Network (and/or
> http://www.pullthrough.org/glossary/diagnosis.htm
>
>
> Trust Fund for Children with Special Needs
> Children's Special Health Care Services (CSHCS) is a program within the
> Department of Community Health. It is for children and some adults with
> special health care needs and their families. It helps persons with
chronic
> health problems by providing:
> http://www.mdch.state.mi.us/msa/cshcs/CSHCS.htm
>
>
> By Contribution - Cleft
> Cleft Palate Ambroise Pare, 1510 - 1590. With Franco (?1505-1579), one of
> the first to describe in detail the principles and techniques in the
> surgical treatment of cleft palate. Philbert Joseph Roux, 1780 - 1854.
> Founder of modern cleft lip and
> http://calder.med.miami.edu/Ralph_Millard/cleft.html
>
>
> 2052: Partial trisomy 16q in a full term infant, mosaic for an unbalanced
> translocation, der(19)t(16;19)(q13;q13).
> Program Nr: 2052 Partial trisomy 16q in a full term infant, mosaic for an
> unbalanced translocation, der(19)t(16;19)(q13;q13). H.E. Wyandt, X.L.
Huang,
> J.M. Milunsky. Ctr Human Genetics, Boston Univ Sch Medicine, Boston, MA. A
> 2.935 kg infant with
> http://www.faseb.org/genetics/ashg99/f2052.htm
>
>
> Nephropathology Specialty Conference
> Nephropathology Specialty Conference Case 1 This patient was a 4100g, full
> term product of an uncomplicated pregnancy, born to a 27-year-old G5P3 Ab2
> mother with Apgars of 9 1 and 9 5 . He had a small phallus, mid-shaft
> hypospadius with meatal
> http://www.med.ualberta.ca/rps/case1.htm
>
>
>
>
>
> ----- Original Message -----
> From: <adrenal_hyperplasia@yahoogroups.com>
> To: <adrenal_hyperplasia@yahoogroups.com>
> Sent: Friday, November 30, 2001 6:50 PM
> Subject: [adrenal_hyperplasia] Digest Number 95
>
>
> > There is 1 message in this issue.
> >
> > Topics in this digest:
> >
> >       1. Testosterone Cream??
> >            From: "Anna" <anna26_2@...>
> >
> >
> > ________________________________________________________________________
> > ________________________________________________________________________
> >
> > Message: 1
> >    Date: Thu, 29 Nov 2001 23:28:49 -0000
> >    From: "Anna" <anna26_2@...>
> > Subject: Testosterone Cream??
> >
> >   While meeting with the suregeon that will be doing Jacob's
> > hypospadius repair he had mentioned that instead of the injections of
> > Testosterone to bring growth of tissue, that there was a cream that
> > would bring about the same effect needed prior to surgery. This is
> > the first I had heard of a cream and was just curious to find out if
> > anyone had to use the cream as opposed to the injection and was it
> > effective enough for the hypospadius surgery, or visa-versa, were
> > there any complications with the injections?
> > Thanks,
> > ~Anna
> >
> >
> >
> > ________________________________________________________________________
> > ________________________________________________________________________
> >
> >
> >
> > 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/
>
>

Congenital Adrenal hyperplasia Research, Education and Support Foundation, Inc.

Kelly R. Leight, Executive Director

P.O. Box 264, Short Hills, New Jersey 07078

URL: www.caresfoundation.org      

NOTE NEW EMAIL ADDRESS: Kelly@...

Phone: 973-912-3895 (in New Jersey)

Toll Free: 1-866-227-3737

December 2001

Happy Holidays to All!

The Lecture/ Support Group Meeting Was a Huge Success!

On November 14, 2001, CARES Foundation, Inc., in conjunction with Dr. Maria New and New York Presbyterian Hospital-Weill Cornell Medical Center, hosted its first lecture/support group meeting for CAH families. Dr. New presented the findings of her newly published study on prenatal therapy for mothers at risk of giving birth to a CAH virilized females.  For discussion of that study, please see article below. Dr. Susan Baker, the psychologist at Cornell who works with Dr. New and counsels many CAH patients and their families, also presented her findings on a study of frequently asked questions by adults who suffer from CAH and non-classical CAH.  Most affected individuals were concerned about treatment options and side effects of medications and the disease. Dr. Baker is preparing a booklet that will address the most frequently asked questions. Dr New also discussed her gene therapy research that holds the promise of a potential “cure” for CAH. CARES Foundation, Inc. presented Dr. New with a check representing its first research grant for the Gene Therapy program at Cornell-Weill Medical Center to support Dr. New’s research.

The lecture was videotaped. Copies will be available for a small fee from CARES Foundation in mid-December.

The best part of the evening for me (Kelly), however, was meeting the many families who attended. There were several whom I had spoken to over the phone or corresponded with, but I was finally able to put a face to the name. People brought photos of their beautiful children and we shared our experiences. One couple attended who had just given birth to a CAH daughter 13 days prior. Their daughter was still in the hospital. Parents who had been through the same experience were able to reassure them that their daughter would be fine. It was a wonderful, heartwarming, supportive and educational experience for me and I hope for the others who attended. I hope many more will be able to attend our next lecture/support group meeting on February 27th.

Our Next Lecture/ Support Group Meeting with Dr. New is Scheduled for February 27th! Save the Date!

On February 27th, 2002, CARES Foundation, Inc. will be sponsoring another lecture and support group meeting with Dr. New at NY Presbyterian Hospital -Weill Cornell Medical Center. The lecture will address issues of concern for non-classical CAH individuals and families, but most topics will be of interest to classical CAH patients as well. Since Dr. New ran out of time at the last lecture and was unable to discuss Growth Hormone therapy, we hope she will address this subject at this lecture. Please mark your calendars and plan to come! An Email alert with details will be sent out closer to the event.

New Study By Dr. Maria New on the Benefits and Safety of Prenatal Therapy

In the December edition of the Journal Of Clinical Endocrinology and Metabolism, Dr. New will be publishing her study Prenatal Diagnosis for Congenital Adrenal Hyperplasia in 532 Pregnancies. Her study confirms the safety and efficacy of prenatal treatment for expectant mothers and their babies at risk for virilization from CAH. It shows no apparent risk to child (CAH-affected or not) or mother.

The treatment involves the pregnant mother taking dexamethasone starting at or before the 9th week of pregnancy to suppress the excess adrenal androgen secretion and prevent virilization should the fetus be a CAH-affected female. Once diagnosis is made via chorionic villus sampling or amniocentesis and the fetus is an unaffected female or a male, the treatment is discontinued. If the fetus is diagnosed as an affected female, the treatment is continued through the remainder of the pregnancy. The mother must be carefully followed by during the pregnancy. The study shows that there were no real differences in the symptoms during pregnancy between those treated with the dexamethasone and those untreated, except that additional weight gain (which was lost after pregnancy), edema, and striae (stretch marks) were somewhat greater in the treated group. There were no lasting side effects in the fetuses proving that the treatment is safe. Most importantly, of those mothers who began the treatment at or before the 9th week of pregnancy, the amount of virilization was substantially reduced or in many cases completely eliminated. The vast majority of female CAH-affected babies whose mothers were treated with Dex beginning by the 9th week of the pregnancy and completed the course of treatment did not require any surgery for virilization.  The prenatal treatment spares the female the consequences of genital ambiguity, potential surgery and possible sex misassignment. 

We at CARES Foundation, Inc. thank Dr. Maria New for her groundbreaking research on prenatal therapy that will improve the quality of life for so many CAH affected females.

Update on Newborn Screening

Beginning on January 1, 2002, a number of states will add CAH to their newborn screening programs including Oregon, Virginia, Arizona and Missouri. Arizona and Oregon will be doing a 2-part screen that detects a greater number of simple virilizers and non-classicals than the standard screen. In April, 2002 New York will finally begin screening for CAH, and the state will be doing genotyping as an adjunct to the regular testing. This will help to determine the type of CAH affecting the child. Vermont just approved adding CAH screening, but has no set start date finalized. We also applaud the Health Departments of Maryland, Mississippi, New Jersey, Delaware and Maine that began CAH newborn screening in the last 6 months.  With the addition of Vermont, the number of states that screen for CAH at birth is 34!

Dr. Piero Rinaldo of the Mayo Clinic is completing his research on the usefulness of Tandem Mass Spectrometry technology in CAH screening and its ability to eliminate up to 95% of all false positive results, as well as its ability to detect a greater number of simple virilizers and non-classicals. We are looking forward to seeing the results of his research.

In addition, NeoGen Screening, Inc. a private laboratory in Pennsylvania is doing research on genotyping in CAH newborn screening. This would also provide better accuracy in newborn screening for CAH.

CARES Foundation’s Advocacy Efforts For Expanded Newborn Screening

CARES Foundation is stepping up its efforts to advocate for CAH newborn screening in all states. Unfortunately, many states still do not screen for CAH at birth despite its life-saving benefits. That means that all classical CAH male babies and those females who are so virilized they are sent home as males born in those states are at risk of dying or suffering a traumatic and life-threatening adrenal crisis.

For more information about CAH newborn screening, please visit the CARES Foundation web site at http://www.caresfoundation.org/nbs.html.

In California, we are working with the March of Dimes, which is making CAH newborn screening one of its top legislative priorities. I need California residents to help CARES Foundation advocate for the addition of CAH screening to the California newborn screening program. It involves letter writing, making telephone calls to legislators, reaching out to and speaking to the media, speaking at hearings if necessary, and taking advantage of any personal contacts we might have. It would be especially helpful if someone has a connection to the Governor of California, as he is the person holding things up right now.

We should also get our California pediatric endocrinologists, OB/GYNs and pediatricians to get involved. Ask them to write letters and make phone calls.

I need one person to act as the State coordinator, who will work closely with the March of Dimes and coordinate the efforts of the other parents. Beyond that I just need lots of "noise makers" It may take a while, but if we can make enough noise, they can't ignore us.

Also, any parents in any state who have, unfortunately, lost their child because they were not identified as having CAH in time, please contact me. If you would be willing to speak out about your tragedy, you might be able to help save the life of another family's child.

We have parents in Ohio and Utah coordinating the efforts there as well, but they need more help. If you live in a state that does not screen for CAH at birth and you are willing to work on advocacy, your efforts would be truly helpful. CARES Foundation will instruct you on advocacy if needed.

Please email or call Kelly Leight if you can help out at Kelly@... or  call 1-866-227-3737 (outside NJ) or in NJ - 973-912-3895.

Kelly Leight To Speak as A Panel Member at Robert Wood Johnson Medical School on January 8, 2002.

Kelly Leight has been invited to participate in panel discussion of the issues and controversy surrounding surgical options for children born with ambiguous genitilia before the medical students and faculty at Robert Wood Johnson Medical School in New Brunswick, New Jersey. The other panelists include Dr. William Reiner from Johns Hopkins, Dr. Nina Williams, a therapist who counsels women with CAH, and several CAH adult women.  Kelly Leight’s presentation will focus on the necessity for support for parents and the importance of sensitivity to the concerns of parents. The panel discussion is from 9-11 am at the medical school. The lecture is not open to the public, but if you wish to attend, contact Kelly Leight, and she will make entry arrangements for you.

Volunteers Needed!

Please Contact Kelly Leight if you can help with any of the following:

We need someone to work on getting the charity registrations in key states. This involves phone calls (out of state) and sending the needed documents to the states.

We need someone to work with another NY state mom to organize a family day event in the spring. Soup to nuts--do everything. Call Susan Donohoe at 845-265-3306 if you can help with Family Day.

Susan is also coordinating the creation of a video about living with CAH. If you have special skills related to video and film, please call her as well.

We need someone to put together our newsletter (semi or bi annual) with updates via email. I also need written contributions from parents on topics of interest.

We need someone to coordinate fundraising activities and someone to write some grants. Contacts with drug companies and medical insurance companies help.

Once all of our materials are together, we will need someone to mail them out whenever we get a request. We also need people to bring brochures to their endocrinologists’ offices.

We need a national newborn screening coordinator--someone to keep track of CAH screening in the states.

Kindly specify exactly which of the above projects you are willing to help with.

About CARES Foundation, Inc.

Two years ago, our daughter, Alyssa, was diagnosed with a genetic disorder called non-classical Congenital Adrenal Hyperplasia (CAH). As we attempted to research the disease, we found that there were no active support organizations for families and affected individuals and few resources for learning about the disease despite the fact that the non-classical form of the CAH is the most common genetic disease identified to date. My husband Adam and I felt that we could make a difference in the lives of those affected by all forms of CAH and their families and could help to publicize the non-classical form of the disease in the most affected ethnic groups. So, this past year, we formed CARES Foundation, Inc. (Congenital Adrenal hyperplasia Research Education and Support), a non-profit 501c(3) organization. Its purpose is to educate the public and physicians about all forms of Congenital Adrenal Hyperplasia, its symptoms, diagnostic protocols, treatment, genetic frequency, the necessity for early intervention and benefits of newborn screening. It is also dedicated to providing support and information to affected individuals and their families. We also will provide medical scholarships to those in need and donate funds to CAH-related research. CARES Foundation, Inc. can only continue its work through your tax-exempt donations and support.

Thank You,

Kelly R. Leight, Founder and Executive Director

Please Consider a Donation to CARES Foundation or Help with Fundraising

This holiday season, please consider  making a tax deductible contribution to CARES Foundation, Inc.  So far, all expenses of CARES Foundation have been subsidized by the Executive Director, Kelly Leight and her husband, Adam, with the exception of a small grant from the PerkinElmer-Wallac company, a company that produces newborn screening equipment. A donation form is included in this newsletter. We have many plans in the works for the future, including a video on the subject of Living With CAH aimed at families with newly diagnosed children; printing of brochures and purchasing of educational materials for families; outreach and educational efforts; a family day event for the spring to be held in the NYC vicinity; the NYC lecture/ support group meeting set for February and similar events to be held in Maryland, California and Texas; preparation of a nationwide list of pediatric endocrinologists with experience in treating CAH; continued advocacy for CAH newborn screening; grants for CAH related research; and medical scholarships for families in need of specialist care. CARES Foundation, Inc. has been chosen to be the featured support organization for the March 2002 issue of Exceptional Parent Magazine.

CARES Foundation Accomplishments for 2001:

Organization Established 3/01;

Tax Exempt status --501(c)3 received from IRS 8/01;

Grant received from PerkinElmer-Wallac 8/01;

 Played a major role in the expansion of newborn screening in New Jersey including CAH;

Contributed to two New York Times articles on Early Puberty written by Gina Kolata;

Featured in CBS Evening News Segment on Early Puberty;

Featured in New Jersey Jewish News article on Non-classical CAH and its prevalence in the Jewish population;

Establishment of CARES Foundation web site, www.caresfoundation.org 4/01;

Organizational Board Member of Tyler For Life Foundation (advocacy group for newborn screening);

Pending memberships in NORD and Genetic Alliance;

Lecture and Support Group meeting 11/14/01;

First CARES Foundation Research Grant given to CAH Gene Therapy Program at NY Presbyterian Hospital-Weill Cornell Medical Center 11/01;

First Newsletter 12/01.

CARES Foundation, Inc cannot continue these efforts without financial support from you. Please consider giving generously.

You might also wish to assist in fundraising.  Adam and Kelly Leight will be putting a fundraising letter in all of their Holidays cards this year and we hope you will consider doing the same. Here is a form of fundraising letter:

 Dear Family and Friends,

In this holiday season, our family has chosen to support an organization dear to our hearts. It is a relatively new organization, so any gift you can make would be particularly meaningful. CARES Foundation, Inc. (Congenital Adrenal hyperplasia Research Education and Support) is a non-profit 501c(3) organization dedicated to educating the public and physicians about all forms of Congenital Adrenal Hyperplasia, its symptoms, diagnostic protocols, treatment, genetic frequency, the necessity for early intervention and benefits of newborn screening. It is also dedicated to providing support and information to affected individuals and their families. CARES Foundation, Inc. can only continue its work through your tax-exempt donations and support.

As many of you know, [I am] our child[ren], _________, is [are] affected by a form of Congenital Adrenal Hyperplasia. Congenital Adrenal Hyperplasia is a family of inherited disorders affecting the adrenal gland. The most common form is 21-hydroxylase deficiency, which is inherited in severe or mild forms. The severe form, called Classical CAH (CAH), is usually detected in the newborn period or in early childhood. The genetic frequency of Classical CAH is approximately 1 in 15,000 births. The milder form, called Non-Classical CAH (NCCAH), may cause symptoms at anytime from infancy through adulthood. Non-Classical CAH is a much more common disorder than Classical CAH. It affects 1 in 100 in the general population of New York City and is most common in certain ethnic groups. It affects 1 in 27 Ashkenazi Jews, 1 in 40 Hispanics, 1 in 53 Croatians, and 1 in 300 Italians. This frequency makes NCCAH the most frequent genetic disorder identified to date.

Congenital Adrenal Hyperplasia (CAH), in its severest form, is a life-threatening disorder. It is caused by a defect in the gene coding for an enzyme, steroid 21-hydroxalase, important to cortisol production and without which adrenal insufficiency results. Its severest form, called Classical CAH, carries with it a salt-wasting factor-- an inability to produce aldosterone, which, if undetected at birth, can lead to adrenal crisis and death. Frequently, these babies present for urgent medical attention at a time when they are beyond resuscitation. Classical CAH children with careful medical care can live a long and normal life. There are many health issues that families and individuals are presented with throughout their lives, but the disease can be managed with medication.

Non-Classical CAH (NCCAH), is much more common than Classical CAH. But-perhaps because it is less severe and harder to recognize than the classical form of the disease, NCCAH has not received the attention it deserves as a widespread condition that affects health and quality of life. Symptoms of NCCAH include: premature puberty, premature adrenarche (manifest as body odor or pubic hair in young children), abnormal bone aging leading to rapid growth in early childhood but ultimate short stature, severe acne, oily hair and skin, and later in life, infertility in men and women. Anxiety and depression are also common symptoms. These symptoms are treatable with glucocortiods.

CARES Foundation, Inc. provides many services to the CAH community including a physician referral service for parents and affected adults, educational lectures, support groups, maintenance of a web site with many resources, and providing of free informational materials. It also provides medical scholarships to needy families for specialist care and grants to medical institutions for CAH-related research. We hope to expand the services  CARES Foundation, Inc. offers to the CAH community and its efforts to educate the public, the medical community and the most affected ethnic groups about NCCAH. It also supports parent efforts to expand newborn screening programs to include screening for CAH at birth as it did with great success in several states this past year.

We ask you to consider supporting CARES Foundation, Inc. and its efforts to provide these services and support to those affected by this disease. Your tax deductible contribution to CARES Foundation, Inc. will help the organization to continue its work.

Happy Holidays to all!

[Your Names]

To our CAH adults and families:

We are trying to create a workable database with the full names and addresses of the CAH community. Please help us to help you. For many of you, I only have a first name and email address. You can cut and paste this form and put it in an email to Kelly Leight at Kelly@...

or call and leave us a message with the information at 1-866-227-3737

Thank you for your help! All information will be kept confidential.

Please tell us the following:

Name ___________________________________________________________________

Address__________________________________________________________________

Telephone number_____________________

email address_________________________

Affected adult______

Child[ren] with CAH and how many_____

Type of CAH:

  Non-classical/late-onset CAH___________

  Salt-Wasting_____________

  Simple Virilizing___________

Please put us on your email alert list_______

Snail mail only________

(Congenital Adrenal hyperplasia Research, Education and Support)                 

Kelly R. Leight, Executive Director

P.O. Box 264, Short Hills, New Jersey 07078

URL: www.caresfoundation.org      

email: Kelly@...

Phone: 973-912-3895 (in New Jersey)

Toll Free: 1-866-227-3737

NAME:___________________________________________________________

ADDRESS:________________________________________________________

TELEPHONE:______________________________________________________

EMAIL:__________________________________________________________

I/we would like to learn more about CARES Foundation, Inc and CAH.___

Please put me on the CARES Foundation, Inc. email list.____

Your Tax Deductible Contribution:

$1000___       $100____

$500____       $50_____

250_____       $OTHER_________

Matching Gift Program Available? Name of Company:____________________________

Check enclosed $________

Please charge to my credit card. MC____   VISA____  AMEX______

Number_______________________      Exp. date________________

Signature (for credit card authorization)________________________________________

From Our Family To Yours--Our Best Wishes of the Season

And a Happy, HEALTHY New Year!

Kelly, Adam, Josh and Alyssa Leight

here is a search on the web = results of hypospadius
I hope it helps

eBility - Hypospadius Repair
Read about this abnormality of the penis, repair, risks, and recovery.
http://www.ebility.com/ency/article/003000.htm


Medline plus - Hypospadius
Read about this abnormality of the penis where the meatus (opening) does not
reach the end.
http://www.nlm.nih.gov/medlineplus/ency/imagepage/9429.htm

WEB PAGES


Re: Re: Re: Undescended testicles with Hypospadius
Re: Re: Re: Undescended testicles with Hypospadius [ Follow Ups ] [ Post
Followup ] [ Preemie-l Discussion Forum ] Posted by William E. Torian on Wed
Jul 18 23:00:33 2001: In Reply to: Re: Re: Undescended testicles with
Hypospadius posted by Purnima
http://home.vicnet.net.au/~garyh/preemie_forum/messages/1331.html


Re: Re: Undescended testicles with Hypospadius
Re: Re: Undescended testicles with Hypospadius [ Follow Ups ] [ Post
Followup ] [ Preemie-l Discussion Forum ] Posted by Purnima on May 29, 1999
at 10:34:17: In Reply to: Re: Undescended testicles with Hypospadius posted
by Karin on May 28, 1999 at
http://home.vicnet.net.au/~garyh/preemie_forum/old-messages/8035.html


MEDWEB QUESTION: HYPOSPADIUS
Back to Q and A page Back to recently asked questions QUESTION: I am
28-years-old and I was born with hypospadius. The condition I had was that
the testicles were split in the middle and the hole to pass urine was formed
between them. Though my pare
http://www.hvmedweb.com/mw1/qanda/hypospadius_stellato.htm


WebMD/Lycos - Article - Hypospadius
With Lycos, WebMD offers a comprehensive online health resource. Whether you
want to get information about a medical condition, learn more about leading
a healthier lifestyle, or talk to others with similar health concerns, WebMD
is the place to go.
http://webmd.lycos.com/content/asset/adam_imagepage_9429


Johns Hopkins - Brady Urological Institute- Innovative Surgical Techniques
Study extols the advantages of this type of kidney transplant, with info on
techniques, patient selection and detailed drawings of the surgery.
http://prostate.urol.jhu.edu/clinic/nephrectomy


Pediatric Urology
Pediatric Urologists treat problems of the genitalia and urinary tract (such
as hypospadius, undescended testicle, hydrocele, enuresis, hydronephrosis,
and vesicoureteral reflux) in infants, children and adolescents.
http://www.pedisurg.com/urology.htm


Medical Domain Names For Sale or Lease
MedicalDomains.com -A vast selection of medically oriented domains for sale
or lease. Domain Names for sale. Medical related Domain Names Specializing
in Health Domains for Sale. Also offering an extensive line of top level
domains, including Medica
http://www.plasticsurgerydirect.com/links-ps/HypLink.html


http://www.godubai.com/aldowali/urology.html
-Select- Opthalmology General Surgery Plastic Surgery ENT Urology
Orthopaedics Gynaelogy Cardiology Dentistry Radiology Intensive Care Unit
Dermatology Paediatric Laboratory X-Ray This department benefits from
resectascope equipment for the
http://www.godubai.com/aldowali/urology.html


Main
Pediatric Urology Children's Hospital of Wisconsin General considerations
About the Staff Pediatric Clinic How To Get To The ClinicReturn to Urology
Clinic Page Pediatric Urology A Service of Children's Hospital of Wisconsin
We offer diagnostic
http://www.mcw.edu/urology/Main.html



Medical College of Georgia-Pediatric Urology
Medical College of Georgia, Georgia's Health Sciences University, is located
in Augusta, Georgia
http://cmc.mcg.edu/surg_services/urology


H Index
A B C D E F G H I J K L M N O P Q R S T U V W X Y Z H HANDICAPPED CHILDREN
Please click on the "box below" to view the following topics. H Part I
HADDAD SYNDROME HAIRY CELL LEUKEMIA HALLERMAN-STREIFF SYNDROME HEAD
INJURY/HEADACHE HEALTH HEALTH AND
http://www.childhealthinfo.com/hindex.htm


6461: Fragile X syndrome associated with birth defects.
Fragile X syndrome associated with birth defects. L.E. Rhee, S.L. Hatcher,
K.M. Robb and D.R. Towner. UC Davis Health System, Sacramento, California.
We report further evidence that fragile X syndrome might be associated with
birth defects. A know
http://www.faseb.org/ashg97/f6461.html


PTN Glossary-Diagnosis
The Pull-thru Network Glossary Diagnosis This web page is NOT a list of
"problems to expect", rather, it is a compilation of medical problems
(associated with "pull through" surgeries or not) experienced by members of
the Pull-Thru Network (and/or
http://www.pullthrough.org/glossary/diagnosis.htm


Trust Fund for Children with Special Needs
Children's Special Health Care Services (CSHCS) is a program within the
Department of Community Health. It is for children and some adults with
special health care needs and their families. It helps persons with chronic
health problems by providing:
http://www.mdch.state.mi.us/msa/cshcs/CSHCS.htm


By Contribution - Cleft
Cleft Palate Ambroise Pare, 1510 - 1590. With Franco (?1505-1579), one of
the first to describe in detail the principles and techniques in the
surgical treatment of cleft palate. Philbert Joseph Roux, 1780 - 1854.
Founder of modern cleft lip and
http://calder.med.miami.edu/Ralph_Millard/cleft.html


2052: Partial trisomy 16q in a full term infant, mosaic for an unbalanced
translocation, der(19)t(16;19)(q13;q13).
Program Nr: 2052 Partial trisomy 16q in a full term infant, mosaic for an
unbalanced translocation, der(19)t(16;19)(q13;q13). H.E. Wyandt, X.L. Huang,
J.M. Milunsky. Ctr Human Genetics, Boston Univ Sch Medicine, Boston, MA. A
2.935 kg infant with
http://www.faseb.org/genetics/ashg99/f2052.htm


Nephropathology Specialty Conference
Nephropathology Specialty Conference Case 1 This patient was a 4100g, full
term product of an uncomplicated pregnancy, born to a 27-year-old G5P3 Ab2
mother with Apgars of 9 1 and 9 5 . He had a small phallus, mid-shaft
hypospadius with meatal
http://www.med.ualberta.ca/rps/case1.htm





----- Original Message -----
From: <adrenal_hyperplasia@yahoogroups.com>
To: <adrenal_hyperplasia@yahoogroups.com>
Sent: Friday, November 30, 2001 6:50 PM
Subject: [adrenal_hyperplasia] Digest Number 95


> There is 1 message in this issue.
>
> Topics in this digest:
>
>       1. Testosterone Cream??
>            From: "Anna" <anna26_2@...>
>
>
> ________________________________________________________________________
> ________________________________________________________________________
>
> Message: 1
>    Date: Thu, 29 Nov 2001 23:28:49 -0000
>    From: "Anna" <anna26_2@...>
> Subject: Testosterone Cream??
>
>   While meeting with the suregeon that will be doing Jacob's
> hypospadius repair he had mentioned that instead of the injections of
> Testosterone to bring growth of tissue, that there was a cream that
> would bring about the same effect needed prior to surgery. This is
> the first I had heard of a cream and was just curious to find out if
> anyone had to use the cream as opposed to the injection and was it
> effective enough for the hypospadius surgery, or visa-versa, were
> there any complications with the injections?
> Thanks,
> ~Anna
>
>
>
> ________________________________________________________________________
> ________________________________________________________________________
>
>
>
> Your use of Yahoo! Groups is subject to http://docs.yahoo.com/info/terms/
>
>

While meeting with the suregeon that will be doing Jacob's
hypospadius repair he had mentioned that instead of the injections of
Testosterone to bring growth of tissue, that there was a cream that
would bring about the same effect needed prior to surgery. This is
the first I had heard of a cream and was just curious to find out if
anyone had to use the cream as opposed to the injection and was it
effective enough for the hypospadius surgery, or visa-versa, were
there any complications with the injections?
Thanks,
~Anna

Hope I didn't confuse anyone with my last P.S Note, I received an e-
mail from a diff board, sorry and I just responded in this one too!
Was regarding screening test and there success! Jacob had his
screening test, it came back normal a week & a half after we were
home from the NIC unit. I don't see how this can happen unless
counties are not sticking to the regulations and mandates. pricy or
not they are under law..
Hope everyone had a good weekend! Jacob is feeling MUCH better,
fever's gone, no more vomiting, and just a slight cough! :o)

-- In adrenal_hyperplasia@y..., "Anna" <anna26_2@y...> wrote:
> P.s..   take note , though many states claim to test for CAH, there
> are many counties within those states that are not adhearing to
these
> standards. This is what I meant when I said we need to change these
> regulations.. Our county our child was not tested, his newborn
> screening came back Normal! thats the issue. chilling!

P.s..   take note , though many states claim to test for CAH, there
are many counties within those states that are not adhearing to these
standards. This is what I meant when I said we need to change these
regulations.. Our county our child was not tested, his newborn
screening came back Normal! thats the issue. chilling!--- In
adrenal_hyperplasia@y..., "Anna" <anna26_2@y...> wrote:
>   Thank you so much for the Emergency letter, and my deepest
sympathy
> goes out to you for the loss of your daughter, I can't even begin
to
> imagine how that has affected you and your family. ((hugs)) :o(
Most
> times I feel as though were on top of things and then out of no
where
> we are thrown into a loop of concern and doubt and misunderstanding
> and many times just not being heard by the medical staff here in
our
> local hospital.  Jacob has an upcoming appointment in Syracuse and
> Im  planning on asking for more prescriptions of the injection as
> well as a signed Emergency procedures letter from his doctor in the
> event of any future hospital visits. I would love to attend a
lecture
> on CAH and any information regarding dates and times  when they are
> available would be so appreciated. I've also seen on the board here
> that in some states they have regular "picnics" "meetings" of
> patients and parents of CAH, I haven't heard of any here in NY and
if
> anyone knows of any or even think they might know where I could
look
> to find one I would love to hear from you.  The best offense is a
> good defense and Im trying my best to learn everything I need to
> know, and even reading the stuff that doesn't pertain to Jacob's
form
> of CAH is helpfull. He too is a salt waister and now more than ever
> after hearing about your daughter Im driven to stand up for these
> children to give them the voice they need. We're all in this
together
> and sharing information is our most powerfull tool we have to keep
> our children safe & healthy. Im still looking in to Newborn
screening
> regulations in my state that suprisingly don't include CAH, in
hopes
> that even if it takes 50,000 signatures to inact new laws or
> regulations that some day each baby born here in NY as well as
> nationwide can and will be tested for this life threatining
disease.
> How can they not, babies are dying! We have come along way in
> medicine since the days of hush hush, gender challenged issues,
that
> for the lack of better judgement short changed so many. I prey that
> all of us can keep our kids safe & healthy and inturn educate the
so
> called "medical staffs" that do not take this disease as serious as
> it truly is. Thanks again for everything you've shared with me and
> again my heart goes out to you for your loss of your daughter
> Jessica, for her I will Learn more, I will speak out louder and
> fingers crossed It will make a difference.
> Bless you & your family,
> Take care & Stay Safe
> ~ Anna :o)
> --- In adrenal_hyperplasia@y..., "preston" <preston@K...> wrote:
> > I am so glad that you posted on this email loop because CAH is
such
> a
> > difficult condition to find really good doctors for proper
> treatment and
> > management. I have two boys with CAH salt wasting form. I had a
> daughter
> > (our second child) and she died from an adrenal crisis at age 2
> years old.
> > She had a fever and the endo on call insisted that I just double
> the cortef
> > and stop calling him. The ped doctor said do what the endo said
and
> see how
> > she is doing in the morning. In the morning it was TOO LATE!! She
> was in
> > shock and her heart stopped in the ER. They revived her but it
too
> 45
> > minutes and they never gave the cortef injection. They were
waiting
> on the
> > endo to call them and she laid in the ER for almost 2 hours
without
> > injection. I didn't have the injection but I had used it a couple
> of weeks
> > earlier and the drug store was ordering more. In the PICU she was
> in a coma.
> > They told me she was brain dead.  Don't let that happen to you.
Get
> an
> > emergency letter signed telling the ER what to do. Give about 6
or
> more dex
> > or solu-cortef kits. Know as much as you can about CAH. I trusted
> the stupid
> > doctor and now my precious little daughter is dead. Jessica. She
is
> a web
> > site with a tribute to her...and this is the ONLY non-profit
that's
> sole
> > purpose is CAH support. They just had a meeting in NYC. I wish
you
> could
> > have attended. Maybe you can go to the next one. Dr. Maria New
from
> Cornell
> > University lectured about CAH. Anyway the emergency letter is on
> the CARES
> > web site too. The PENS manual are also a must.  If you ever need
> anything -
> > my phone number is 703 697-7357 at work and 703 370-4611 at home.
I
> live in
> > the Washington DC area. One would think that we would have the
best
> doctors
> > and hospital here but guess again.
> >
> > I think the dex injection was good that it lasted longer than the
> > solu-cortef but it is usually used for adults.  Solu-cortef is
> preferred for
> > children because children are still growing and the dex is too
> strong. I am
> > sure that a one time injection did you hurt your child and it
would
> long
> > term use of dex that would cause some growth issues. Another
thing
> to
> > remember is that you can not over dose with the injection but
look
> what
> > happened to my Jessica. You never never never hesitate to use the
> injection
> > kit for a FEVER, recurrenting vomiting or diahrea, or serious
> injury. Of
> > course if there is surgery  - never let them do anything without
> the more
> > cortisol in the IV before, during and after, unless it is just a
> local
> > numbing and minor scatch or cut. The hospital need to monitor
blood
> > pressure, oxygen levels, and heart rate. Continue the IV for 48
to
> 72 hours
> > to rehydrate. Cortisol is needed every 6 hours and not 8 hours in
> there is
> > an infection. They need to monitor the blood's sugar and salt
> levels. Wake
> > the child to give the meds  - especially tylenol or motrin. With
a
> fever  -
> > the fever needs to be reduced and if it does not reduce with 30
to
> 45
> > minutes... give the injection and go to the ER.  Do not wait
until
> you get
> > to the ER. They make you wait too long and don't even know what
to
> do.
> >     The CAH child looks and acts fine and that when some people
> take it for
> > granted. Believe me the flu or fever can KILL a person with CAH.
> There is a
> > 18 year boy on the memorial page because he didn't inject either.
> The
> > doctors didn't know and didn't take CAH seriously. Get the
> emergency letter
> > and carry it with him always. Here is one attached for you to
copy.
> >
> > Kelly R. Leight, Executive Director
> > CARES Foundation, Inc.
> > (Congenital Adrenal hyperplasia Research, Education and Support)
> > P.O. Box 264
> > Short Hills, New Jersey 07078
> > 973-912-3895 (CARES voicemail)
> > URL: www.caresfoundation.org
> > email: caresfoundation@h...
> >
> > RE: Stephen Preston
> >
> > DOB: 12/22/93
> >
> > To Whom It May Concern:
> >
> >
> > Stephen Preston is a young man with congenital adrenal
hyperplasia.
> Due to
> > this condition, he is on medication that makes him adrenally
> insufficient.
> > His regular medications are Cortef and Florinef
> >
> > In the event of a high fever; that is 101 degrees F orally or
> greater,
> > severe lethargy, or recurrent vomiting, or injury Stephen needs
> immediate
> > attention. He should receive Solu-Cortef 100 mg IM or IV as well
as
> IV
> > hydration. The IV hydration should initially include normal
saline
> at 10 cc
> > per kg IV bolus, and then D5-D10 half normal saline at
> approximately 1 and
> > 1/2 maintenance rate. In the event of severe hypoglycemia or
> hyperkalemia, a
> > 10% dextrose solution may be beneficial. Any underlying condition
> should be
> > treated. Obviously sepsis is a major concern in a young child
with
> a high
> > fever and hypertension. The IV hydration should be maintained for
> > approximately 48 hours after the initial onset of the illness. As
> the
> > illness improves, the hydrocortisone can be decreased by about
25%
> every 24
> > hours until maintenance dose is maintained. Usually by 48-72
hours
> the child
> > can return to his maintenance Cortef and Florinef dosages. Blood
> pressure
> > should be monitored as well as temperature and electrolytes.
Because
> > children with congenital adrenal hyperplasia can deteriorate
> quickly.
> > Stephen will need to receive immediate attention.
> >
> > If there is any questions about appropriate treatment or
management
> for
> > Stephen Preston, please do not hesitate to call Northern Virginia
> > Endocrinologist at 703 849-4440. I can also be reached on my
> beeper, 703
> > 550-4440. Please feel free to call.
> > Sincerely
> > Kathleen M. Link, MD
> >
> >
> >
> >
> >
> >
> > ----- Original Message -----
> > From: <adrenal_hyperplasia@y...>
> > To: <adrenal_hyperplasia@y...>
> > Sent: Thursday, November 15, 2001 4:25 AM
> > Subject: [adrenal_hyperplasia] Digest Number 91
> >
> >
> > > There is 1 message in this issue.
> > >
> > > Topics in this digest:
> > >
> > >       1. Re: Digest Number 89
> > >            From: "Anna" <anna26_2@y...>
> > >
> > >
> > >
>
______________________________________________________________________
> __
> > >
>
______________________________________________________________________
> __
> > >
> > > Message: 1
> > >    Date: Thu, 15 Nov 2001 02:54:57 -0000
> > >    From: "Anna" <anna26_2@y...>
> > > Subject: Re: Digest Number 89
> > >
> > > Yeah I have the Dex Injection Kit, I didn't until his last
episode
> > > though, I live in a small town In Upstate NY, See his Endo is in
> > > Syracuse but our local hospital is where I take him if there
are
> any
> > > problems, and on his last visit in there they seemed pretty
> clueless
> > > as to how he needed to be treated. I had to have his endo call
the
> > > doc's here at our local hospital and talk them through his
> treatment
> > > procedures.. well after having to do that I insisted that I
have
> the
> > > injection kit at home to save on the hassle of the 3 way call
and
> the
> > > informing process.. They didn't mention that there was a solu-
> cortef
> > > injection kit, .. when I said that I would like the injecton he
> would
> > > need they just prescribed the dex kit. And unless I actually
open
> one
> > > of the vials and use the required dose the shelf life on it
says
> it's
> > > good until 12/02, of course I have to throw away any unused
> portion
> > > in the vial but it says it should be good until next year. Do
you
> > > know the difference between the two? If one is better than the
> other
> > > I wish they would of told me. Im still learning as we go. good
> news
> > > though he is feeling a bit better, wetting his diapers more and
> now
> > > except for a nagging cough that gags him every now and then and
> > > causes him to vomit he is good, his tummy is still a little off
> and I
> > > think just coughing up the phlem is a bit much just yet, but his
> > > fever seems to be fading slowly and he's just about back to his
> > > normal happy go lucky self again. *sigh, whew! Im still finding
it
> > > amazing that local doctors are so unsure about adrenal
patients,
> it
> > > leaves me wondering if maybe I shouldn't move closer to his
> endo's,
> > > but for now Im doing my best to educate myself and keep good
> records
> > > of each visit to the hospital he may have. Now you got me
> wondering
> > > why they gave him the dex and not the cortef kit though.Talk
with
> you
> > > soon. :o)
> > > ~Anna
> > > -- In adrenal_hyperplasia@y..., "preston" <preston@K...> wrote:
> > > > It is nice to hear from someone out there. I hate flu season.
Do
> > > you have
> > > > the dex injection kit  - so do you just wait until the
hospital
> > > gives it? I
> > > > have solu-cortef injections kits. I guess because it can be
> kept a
> > > long time
> > > > and it milder than the dex. But I wish the doctors would give
> the
> > > dex
> > > > because it is stronger. I live in Washington DC area. Where
do
> you
> > > live?
> > > >
> > > > Roberta
> > > > ----- Original Message -----
> > > > From: <adrenal_hyperplasia@y...>
> > > > To: <adrenal_hyperplasia@y...>
> > > > Sent: Monday, November 12, 2001 4:21 AM
> > > > Subject: [adrenal_hyperplasia] Digest Number 89
> > > >
> > > >
> > > > > There is 1 message in this issue.
> > > > >
> > > > > Topics in this digest:
> > > > >
> > > > >       1. Been Awhile
> > > > >            From: "Anna" <anna26_2@y...>
> > > > >
> > > > >
> > > > >
> > >
>
______________________________________________________________________
> > > __
> > > > >
> > >
>
______________________________________________________________________
> > > __
> > > > >
> > > > > Message: 1
> > > > >    Date: Mon, 12 Nov 2001 00:55:44 -0000
> > > > >    From: "Anna" <anna26_2@y...>
> > > > > Subject: Been Awhile
> > > > >
> > > > > Hi All, It's been ages since I've been in the group
> discussions,
> > > with
> > > > > my oldest son in school now and youngest just turning 2 I'm
> up to
> > > my
> > > > > elbows with stuff to do.. Well Bad news first Jacob has the
> flu
> > > and
> > > > > I'm finding it very nerve racking trying to determine
wether
> he
> > > is ok
> > > > > or maybe I should take him in, or hmm is he wetting his
diaper
> > > enough
> > > > > or am I just being paranoid.. Oye! I've been in constant
> contact
> > > with
> > > > > his endo and they seem to believe I have everything under
> control,
> > > > > allot of help that is, Jacob had a bad spell a couple weeks
> back
> > > with
> > > > > a fever from an ear infection and he ended up in the ER
> having to
> > > > > have 2 liters of IV to rehydrate him as well as an
injection
> of
> > > dex.
> > > > > It seems this time around he is doing a bit better, Im
> doubleing
> > > the
> > > > > Cortef and he's getting fever meds, but trying to get him
to
> want
> > > a
> > > > > drink and keep hydrated is not as easy as it seems it
should
> be. I
> > > > > went out and bought the Pedialyte pops but he says "ick" and
> > > doesn't
> > > > > want anything to do with them, luckily his appetite is
still
> good
> > > and
> > > > > Im able to convince him every once & a while to have a
> regular pop
> > > > > sickle, he is still attached to his bottle so I've had to
> water
> > > down
> > > > > his milk to that I say "ick" but he doesn't seem to mind,
he
> wont
> > > > > take juice from his cup or in his bottle so I'm just having
to
> > > watch
> > > > > his diapers real close and I have his Dex Injection Out and
> ready
> > > > > should I see any change in his attitude. Man oh man this is
> not
> > > easy.
> > > > >   We just had our first consultation appt. with the surgeon
> > > regarding
> > > > > his hypospadius repair and it looks like there shooting for
> this
> > > > > spring, maybe April-May, Im all nervous about that, I just
> put it
> > > out
> > > > > of my mind for now it worries me allot and I prey that
things
> > > will be
> > > > > ok for him. I've added a photo of him to the group albulm,
he
> is
> > > my
> > > > > lil sweetheart, but don't let the smile fool ya he is soooo
> > > stuborn
> > > > > and believe me when I tell ya he is trouble with a capital
T ,
> > > lol..
> > > > > I just wanted to pop in, hope all is well with everyone &
> there
> > > > > precious lil ones..Any advice anyone can give me regarding
> making
> > > it
> > > > > through the flu season, and fever's a little less
stressfull I
> > > think
> > > > > I might just drive over and hug ya, lol best of wishes to
all
> and
> > > > > have a great holiday season.
> > > > > ~Anna :o)
> > > > >
> > > > >
> > > > >
> > > > >
> > >
>
______________________________________________________________________
> > > __
> > > > >
> > >
>
______________________________________________________________________
> > > __
> > > > >
> > > > >
> > > > >
> > > > > 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/
> > >
> > >

Thank you so much for the Emergency letter, and my deepest sympathy
goes out to you for the loss of your daughter, I can't even begin to
imagine how that has affected you and your family. ((hugs)) :o( Most
times I feel as though were on top of things and then out of no where
we are thrown into a loop of concern and doubt and misunderstanding
and many times just not being heard by the medical staff here in our
local hospital.  Jacob has an upcoming appointment in Syracuse and
Im  planning on asking for more prescriptions of the injection as
well as a signed Emergency procedures letter from his doctor in the
event of any future hospital visits. I would love to attend a lecture
on CAH and any information regarding dates and times  when they are
available would be so appreciated. I've also seen on the board here
that in some states they have regular "picnics" "meetings" of
patients and parents of CAH, I haven't heard of any here in NY and if
anyone knows of any or even think they might know where I could look
to find one I would love to hear from you.  The best offense is a
good defense and Im trying my best to learn everything I need to
know, and even reading the stuff that doesn't pertain to Jacob's form
of CAH is helpfull. He too is a salt waister and now more than ever
after hearing about your daughter Im driven to stand up for these
children to give them the voice they need. We're all in this together
and sharing information is our most powerfull tool we have to keep
our children safe & healthy. Im still looking in to Newborn screening
regulations in my state that suprisingly don't include CAH, in hopes
that even if it takes 50,000 signatures to inact new laws or
regulations that some day each baby born here in NY as well as
nationwide can and will be tested for this life threatining disease.
How can they not, babies are dying! We have come along way in
medicine since the days of hush hush, gender challenged issues, that
for the lack of better judgement short changed so many. I prey that
all of us can keep our kids safe & healthy and inturn educate the so
called "medical staffs" that do not take this disease as serious as
it truly is. Thanks again for everything you've shared with me and
again my heart goes out to you for your loss of your daughter
Jessica, for her I will Learn more, I will speak out louder and
fingers crossed It will make a difference.
Bless you & your family,
Take care & Stay Safe
~ Anna :o)
--- In adrenal_hyperplasia@y..., "preston" <preston@K...> wrote:
> I am so glad that you posted on this email loop because CAH is such
a
> difficult condition to find really good doctors for proper
treatment and
> management. I have two boys with CAH salt wasting form. I had a
daughter
> (our second child) and she died from an adrenal crisis at age 2
years old.
> She had a fever and the endo on call insisted that I just double
the cortef
> and stop calling him. The ped doctor said do what the endo said and
see how
> she is doing in the morning. In the morning it was TOO LATE!! She
was in
> shock and her heart stopped in the ER. They revived her but it too
45
> minutes and they never gave the cortef injection. They were waiting
on the
> endo to call them and she laid in the ER for almost 2 hours without
> injection. I didn't have the injection but I had used it a couple
of weeks
> earlier and the drug store was ordering more. In the PICU she was
in a coma.
> They told me she was brain dead.  Don't let that happen to you. Get
an
> emergency letter signed telling the ER what to do. Give about 6 or
more dex
> or solu-cortef kits. Know as much as you can about CAH. I trusted
the stupid
> doctor and now my precious little daughter is dead. Jessica. She is
a web
> site with a tribute to her...and this is the ONLY non-profit that's
sole
> purpose is CAH support. They just had a meeting in NYC. I wish you
could
> have attended. Maybe you can go to the next one. Dr. Maria New from
Cornell
> University lectured about CAH. Anyway the emergency letter is on
the CARES
> web site too. The PENS manual are also a must.  If you ever need
anything -
> my phone number is 703 697-7357 at work and 703 370-4611 at home. I
live in
> the Washington DC area. One would think that we would have the best
doctors
> and hospital here but guess again.
>
> I think the dex injection was good that it lasted longer than the
> solu-cortef but it is usually used for adults.  Solu-cortef is
preferred for
> children because children are still growing and the dex is too
strong. I am
> sure that a one time injection did you hurt your child and it would
long
> term use of dex that would cause some growth issues. Another thing
to
> remember is that you can not over dose with the injection but look
what
> happened to my Jessica. You never never never hesitate to use the
injection
> kit for a FEVER, recurrenting vomiting or diahrea, or serious
injury. Of
> course if there is surgery  - never let them do anything without
the more
> cortisol in the IV before, during and after, unless it is just a
local
> numbing and minor scatch or cut. The hospital need to monitor blood
> pressure, oxygen levels, and heart rate. Continue the IV for 48 to
72 hours
> to rehydrate. Cortisol is needed every 6 hours and not 8 hours in
there is
> an infection. They need to monitor the blood's sugar and salt
levels. Wake
> the child to give the meds  - especially tylenol or motrin. With a
fever  -
> the fever needs to be reduced and if it does not reduce with 30 to
45
> minutes... give the injection and go to the ER.  Do not wait until
you get
> to the ER. They make you wait too long and don't even know what to
do.
>     The CAH child looks and acts fine and that when some people
take it for
> granted. Believe me the flu or fever can KILL a person with CAH.
There is a
> 18 year boy on the memorial page because he didn't inject either.
The
> doctors didn't know and didn't take CAH seriously. Get the
emergency letter
> and carry it with him always. Here is one attached for you to copy.
>
> Kelly R. Leight, Executive Director
> CARES Foundation, Inc.
> (Congenital Adrenal hyperplasia Research, Education and Support)
> P.O. Box 264
> Short Hills, New Jersey 07078
> 973-912-3895 (CARES voicemail)
> URL: www.caresfoundation.org
> email: caresfoundation@h...
>
> RE: Stephen Preston
>
> DOB: 12/22/93
>
> To Whom It May Concern:
>
>
> Stephen Preston is a young man with congenital adrenal hyperplasia.
Due to
> this condition, he is on medication that makes him adrenally
insufficient.
> His regular medications are Cortef and Florinef
>
> In the event of a high fever; that is 101 degrees F orally or
greater,
> severe lethargy, or recurrent vomiting, or injury Stephen needs
immediate
> attention. He should receive Solu-Cortef 100 mg IM or IV as well as
IV
> hydration. The IV hydration should initially include normal saline
at 10 cc
> per kg IV bolus, and then D5-D10 half normal saline at
approximately 1 and
> 1/2 maintenance rate. In the event of severe hypoglycemia or
hyperkalemia, a
> 10% dextrose solution may be beneficial. Any underlying condition
should be
> treated. Obviously sepsis is a major concern in a young child with
a high
> fever and hypertension. The IV hydration should be maintained for
> approximately 48 hours after the initial onset of the illness. As
the
> illness improves, the hydrocortisone can be decreased by about 25%
every 24
> hours until maintenance dose is maintained. Usually by 48-72 hours
the child
> can return to his maintenance Cortef and Florinef dosages. Blood
pressure
> should be monitored as well as temperature and electrolytes. Because
> children with congenital adrenal hyperplasia can deteriorate
quickly.
> Stephen will need to receive immediate attention.
>
> If there is any questions about appropriate treatment or management
for
> Stephen Preston, please do not hesitate to call Northern Virginia
> Endocrinologist at 703 849-4440. I can also be reached on my
beeper, 703
> 550-4440. Please feel free to call.
> Sincerely
> Kathleen M. Link, MD
>
>
>
>
>
>
> ----- Original Message -----
> From: <adrenal_hyperplasia@y...>
> To: <adrenal_hyperplasia@y...>
> Sent: Thursday, November 15, 2001 4:25 AM
> Subject: [adrenal_hyperplasia] Digest Number 91
>
>
> > There is 1 message in this issue.
> >
> > Topics in this digest:
> >
> >       1. Re: Digest Number 89
> >            From: "Anna" <anna26_2@y...>
> >
> >
> >
______________________________________________________________________
__
> >
______________________________________________________________________
__
> >
> > Message: 1
> >    Date: Thu, 15 Nov 2001 02:54:57 -0000
> >    From: "Anna" <anna26_2@y...>
> > Subject: Re: Digest Number 89
> >
> > Yeah I have the Dex Injection Kit, I didn't until his last episode
> > though, I live in a small town In Upstate NY, See his Endo is in
> > Syracuse but our local hospital is where I take him if there are
any
> > problems, and on his last visit in there they seemed pretty
clueless
> > as to how he needed to be treated. I had to have his endo call the
> > doc's here at our local hospital and talk them through his
treatment
> > procedures.. well after having to do that I insisted that I have
the
> > injection kit at home to save on the hassle of the 3 way call and
the
> > informing process.. They didn't mention that there was a solu-
cortef
> > injection kit, .. when I said that I would like the injecton he
would
> > need they just prescribed the dex kit. And unless I actually open
one
> > of the vials and use the required dose the shelf life on it says
it's
> > good until 12/02, of course I have to throw away any unused
portion
> > in the vial but it says it should be good until next year. Do you
> > know the difference between the two? If one is better than the
other
> > I wish they would of told me. Im still learning as we go. good
news
> > though he is feeling a bit better, wetting his diapers more and
now
> > except for a nagging cough that gags him every now and then and
> > causes him to vomit he is good, his tummy is still a little off
and I
> > think just coughing up the phlem is a bit much just yet, but his
> > fever seems to be fading slowly and he's just about back to his
> > normal happy go lucky self again. *sigh, whew! Im still finding it
> > amazing that local doctors are so unsure about adrenal patients,
it
> > leaves me wondering if maybe I shouldn't move closer to his
endo's,
> > but for now Im doing my best to educate myself and keep good
records
> > of each visit to the hospital he may have. Now you got me
wondering
> > why they gave him the dex and not the cortef kit though.Talk with
you
> > soon. :o)
> > ~Anna
> > -- In adrenal_hyperplasia@y..., "preston" <preston@K...> wrote:
> > > It is nice to hear from someone out there. I hate flu season. Do
> > you have
> > > the dex injection kit  - so do you just wait until the hospital
> > gives it? I
> > > have solu-cortef injections kits. I guess because it can be
kept a
> > long time
> > > and it milder than the dex. But I wish the doctors would give
the
> > dex
> > > because it is stronger. I live in Washington DC area. Where do
you
> > live?
> > >
> > > Roberta
> > > ----- Original Message -----
> > > From: <adrenal_hyperplasia@y...>
> > > To: <adrenal_hyperplasia@y...>
> > > Sent: Monday, November 12, 2001 4:21 AM
> > > Subject: [adrenal_hyperplasia] Digest Number 89
> > >
> > >
> > > > There is 1 message in this issue.
> > > >
> > > > Topics in this digest:
> > > >
> > > >       1. Been Awhile
> > > >            From: "Anna" <anna26_2@y...>
> > > >
> > > >
> > > >
> >
______________________________________________________________________
> > __
> > > >
> >
______________________________________________________________________
> > __
> > > >
> > > > Message: 1
> > > >    Date: Mon, 12 Nov 2001 00:55:44 -0000
> > > >    From: "Anna" <anna26_2@y...>
> > > > Subject: Been Awhile
> > > >
> > > > Hi All, It's been ages since I've been in the group
discussions,
> > with
> > > > my oldest son in school now and youngest just turning 2 I'm
up to
> > my
> > > > elbows with stuff to do.. Well Bad news first Jacob has the
flu
> > and
> > > > I'm finding it very nerve racking trying to determine wether
he
> > is ok
> > > > or maybe I should take him in, or hmm is he wetting his diaper
> > enough
> > > > or am I just being paranoid.. Oye! I've been in constant
contact
> > with
> > > > his endo and they seem to believe I have everything under
control,
> > > > allot of help that is, Jacob had a bad spell a couple weeks
back
> > with
> > > > a fever from an ear infection and he ended up in the ER
having to
> > > > have 2 liters of IV to rehydrate him as well as an injection
of
> > dex.
> > > > It seems this time around he is doing a bit better, Im
doubleing
> > the
> > > > Cortef and he's getting fever meds, but trying to get him to
want
> > a
> > > > drink and keep hydrated is not as easy as it seems it should
be. I
> > > > went out and bought the Pedialyte pops but he says "ick" and
> > doesn't
> > > > want anything to do with them, luckily his appetite is still
good
> > and
> > > > Im able to convince him every once & a while to have a
regular pop
> > > > sickle, he is still attached to his bottle so I've had to
water
> > down
> > > > his milk to that I say "ick" but he doesn't seem to mind, he
wont
> > > > take juice from his cup or in his bottle so I'm just having to
> > watch
> > > > his diapers real close and I have his Dex Injection Out and
ready
> > > > should I see any change in his attitude. Man oh man this is
not
> > easy.
> > > >   We just had our first consultation appt. with the surgeon
> > regarding
> > > > his hypospadius repair and it looks like there shooting for
this
> > > > spring, maybe April-May, Im all nervous about that, I just
put it
> > out
> > > > of my mind for now it worries me allot and I prey that things
> > will be
> > > > ok for him. I've added a photo of him to the group albulm, he
is
> > my
> > > > lil sweetheart, but don't let the smile fool ya he is soooo
> > stuborn
> > > > and believe me when I tell ya he is trouble with a capital T ,
> > lol..
> > > > I just wanted to pop in, hope all is well with everyone &
there
> > > > precious lil ones..Any advice anyone can give me regarding
making
> > it
> > > > through the flu season, and fever's a little less stressfull I
> > think
> > > > I might just drive over and hug ya, lol best of wishes to all
and
> > > > have a great holiday season.
> > > > ~Anna :o)
> > > >
> > > >
> > > >
> > > >
> >
______________________________________________________________________
> > __
> > > >
> >
______________________________________________________________________
> > __
> > > >
> > > >
> > > >
> > > > 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 am so glad that you posted on this email loop because CAH is such a
difficult condition to find really good doctors for proper treatment and
management. I have two boys with CAH salt wasting form. I had a daughter
(our second child) and she died from an adrenal crisis at age 2 years old.
She had a fever and the endo on call insisted that I just double the cortef
and stop calling him. The ped doctor said do what the endo said and see how
she is doing in the morning. In the morning it was TOO LATE!! She was in
shock and her heart stopped in the ER. They revived her but it too 45
minutes and they never gave the cortef injection. They were waiting on the
endo to call them and she laid in the ER for almost 2 hours without
injection. I didn't have the injection but I had used it a couple of weeks
earlier and the drug store was ordering more. In the PICU she was in a coma.
They told me she was brain dead.  Don't let that happen to you. Get an
emergency letter signed telling the ER what to do. Give about 6 or more dex
or solu-cortef kits. Know as much as you can about CAH. I trusted the stupid
doctor and now my precious little daughter is dead. Jessica. She is a web
site with a tribute to her...and this is the ONLY non-profit that's sole
purpose is CAH support. They just had a meeting in NYC. I wish you could
have attended. Maybe you can go to the next one. Dr. Maria New from Cornell
University lectured about CAH. Anyway the emergency letter is on the CARES
web site too. The PENS manual are also a must.  If you ever need anything -
my phone number is 703 697-7357 at work and 703 370-4611 at home. I live in
the Washington DC area. One would think that we would have the best doctors
and hospital here but guess again.

I think the dex injection was good that it lasted longer than the
solu-cortef but it is usually used for adults.  Solu-cortef is preferred for
children because children are still growing and the dex is too strong. I am
sure that a one time injection did you hurt your child and it would long
term use of dex that would cause some growth issues. Another thing to
remember is that you can not over dose with the injection but look what
happened to my Jessica. You never never never hesitate to use the injection
kit for a FEVER, recurrenting vomiting or diahrea, or serious injury. Of
course if there is surgery  - never let them do anything without the more
cortisol in the IV before, during and after, unless it is just a local
numbing and minor scatch or cut. The hospital need to monitor blood
pressure, oxygen levels, and heart rate. Continue the IV for 48 to 72 hours
to rehydrate. Cortisol is needed every 6 hours and not 8 hours in there is
an infection. They need to monitor the blood's sugar and salt levels. Wake
the child to give the meds  - especially tylenol or motrin. With a fever  -
the fever needs to be reduced and if it does not reduce with 30 to 45
minutes... give the injection and go to the ER.  Do not wait until you get
to the ER. They make you wait too long and don't even know what to do.
     The CAH child looks and acts fine and that when some people take it for
granted. Believe me the flu or fever can KILL a person with CAH. There is a
18 year boy on the memorial page because he didn't inject either. The
doctors didn't know and didn't take CAH seriously. Get the emergency letter
and carry it with him always. Here is one attached for you to copy.

Kelly R. Leight, Executive Director
CARES Foundation, Inc.
(Congenital Adrenal hyperplasia Research, Education and Support)
P.O. Box 264
Short Hills, New Jersey 07078
973-912-3895 (CARES voicemail)
URL: www.caresfoundation.org
email: caresfoundation@...

RE: Stephen Preston

DOB: 12/22/93

To Whom It May Concern:


Stephen Preston is a young man with congenital adrenal hyperplasia. Due to
this condition, he is on medication that makes him adrenally insufficient.
His regular medications are Cortef and Florinef

In the event of a high fever; that is 101 degrees F orally or greater,
severe lethargy, or recurrent vomiting, or injury Stephen needs immediate
attention. He should receive Solu-Cortef 100 mg IM or IV as well as IV
hydration. The IV hydration should initially include normal saline at 10 cc
per kg IV bolus, and then D5-D10 half normal saline at approximately 1 and
1/2 maintenance rate. In the event of severe hypoglycemia or hyperkalemia, a
10% dextrose solution may be beneficial. Any underlying condition should be
treated. Obviously sepsis is a major concern in a young child with a high
fever and hypertension. The IV hydration should be maintained for
approximately 48 hours after the initial onset of the illness. As the
illness improves, the hydrocortisone can be decreased by about 25% every 24
hours until maintenance dose is maintained. Usually by 48-72 hours the child
can return to his maintenance Cortef and Florinef dosages. Blood pressure
should be monitored as well as temperature and electrolytes. Because
children with congenital adrenal hyperplasia can deteriorate quickly.
Stephen will need to receive immediate attention.

If there is any questions about appropriate treatment or management for
Stephen Preston, please do not hesitate to call Northern Virginia
Endocrinologist at 703 849-4440. I can also be reached on my beeper, 703
550-4440. Please feel free to call.
Sincerely
Kathleen M. Link, MD






----- Original Message -----
From: <adrenal_hyperplasia@yahoogroups.com>
To: <adrenal_hyperplasia@yahoogroups.com>
Sent: Thursday, November 15, 2001 4:25 AM
Subject: [adrenal_hyperplasia] Digest Number 91


> There is 1 message in this issue.
>
> Topics in this digest:
>
>       1. Re: Digest Number 89
>            From: "Anna" <anna26_2@...>
>
>
> ________________________________________________________________________
> ________________________________________________________________________
>
> Message: 1
>    Date: Thu, 15 Nov 2001 02:54:57 -0000
>    From: "Anna" <anna26_2@...>
> Subject: Re: Digest Number 89
>
> Yeah I have the Dex Injection Kit, I didn't until his last episode
> though, I live in a small town In Upstate NY, See his Endo is in
> Syracuse but our local hospital is where I take him if there are any
> problems, and on his last visit in there they seemed pretty clueless
> as to how he needed to be treated. I had to have his endo call the
> doc's here at our local hospital and talk them through his treatment
> procedures.. well after having to do that I insisted that I have the
> injection kit at home to save on the hassle of the 3 way call and the
> informing process.. They didn't mention that there was a solu- cortef
> injection kit, .. when I said that I would like the injecton he would
> need they just prescribed the dex kit. And unless I actually open one
> of the vials and use the required dose the shelf life on it says it's
> good until 12/02, of course I have to throw away any unused portion
> in the vial but it says it should be good until next year. Do you
> know the difference between the two? If one is better than the other
> I wish they would of told me. Im still learning as we go. good news
> though he is feeling a bit better, wetting his diapers more and now
> except for a nagging cough that gags him every now and then and
> causes him to vomit he is good, his tummy is still a little off and I
> think just coughing up the phlem is a bit much just yet, but his
> fever seems to be fading slowly and he's just about back to his
> normal happy go lucky self again. *sigh, whew! Im still finding it
> amazing that local doctors are so unsure about adrenal patients, it
> leaves me wondering if maybe I shouldn't move closer to his endo's,
> but for now Im doing my best to educate myself and keep good records
> of each visit to the hospital he may have. Now you got me wondering
> why they gave him the dex and not the cortef kit though.Talk with you
> soon. :o)
> ~Anna
> -- In adrenal_hyperplasia@y..., "preston" <preston@K...> wrote:
> > It is nice to hear from someone out there. I hate flu season. Do
> you have
> > the dex injection kit  - so do you just wait until the hospital
> gives it? I
> > have solu-cortef injections kits. I guess because it can be kept a
> long time
> > and it milder than the dex. But I wish the doctors would give the
> dex
> > because it is stronger. I live in Washington DC area. Where do you
> live?
> >
> > Roberta
> > ----- Original Message -----
> > From: <adrenal_hyperplasia@y...>
> > To: <adrenal_hyperplasia@y...>
> > Sent: Monday, November 12, 2001 4:21 AM
> > Subject: [adrenal_hyperplasia] Digest Number 89
> >
> >
> > > There is 1 message in this issue.
> > >
> > > Topics in this digest:
> > >
> > >       1. Been Awhile
> > >            From: "Anna" <anna26_2@y...>
> > >
> > >
> > >
> ______________________________________________________________________
> __
> > >
> ______________________________________________________________________
> __
> > >
> > > Message: 1
> > >    Date: Mon, 12 Nov 2001 00:55:44 -0000
> > >    From: "Anna" <anna26_2@y...>
> > > Subject: Been Awhile
> > >
> > > Hi All, It's been ages since I've been in the group discussions,
> with
> > > my oldest son in school now and youngest just turning 2 I'm up to
> my
> > > elbows with stuff to do.. Well Bad news first Jacob has the flu
> and
> > > I'm finding it very nerve racking trying to determine wether he
> is ok
> > > or maybe I should take him in, or hmm is he wetting his diaper
> enough
> > > or am I just being paranoid.. Oye! I've been in constant contact
> with
> > > his endo and they seem to believe I have everything under control,
> > > allot of help that is, Jacob had a bad spell a couple weeks back
> with
> > > a fever from an ear infection and he ended up in the ER having to
> > > have 2 liters of IV to rehydrate him as well as an injection of
> dex.
> > > It seems this time around he is doing a bit better, Im doubleing
> the
> > > Cortef and he's getting fever meds, but trying to get him to want
> a
> > > drink and keep hydrated is not as easy as it seems it should be. I
> > > went out and bought the Pedialyte pops but he says "ick" and
> doesn't
> > > want anything to do with them, luckily his appetite is still good
> and
> > > Im able to convince him every once & a while to have a regular pop
> > > sickle, he is still attached to his bottle so I've had to water
> down
> > > his milk to that I say "ick" but he doesn't seem to mind, he wont
> > > take juice from his cup or in his bottle so I'm just having to
> watch
> > > his diapers real close and I have his Dex Injection Out and ready
> > > should I see any change in his attitude. Man oh man this is not
> easy.
> > >   We just had our first consultation appt. with the surgeon
> regarding
> > > his hypospadius repair and it looks like there shooting for this
> > > spring, maybe April-May, Im all nervous about that, I just put it
> out
> > > of my mind for now it worries me allot and I prey that things
> will be
> > > ok for him. I've added a photo of him to the group albulm, he is
> my
> > > lil sweetheart, but don't let the smile fool ya he is soooo
> stuborn
> > > and believe me when I tell ya he is trouble with a capital T ,
> lol..
> > > I just wanted to pop in, hope all is well with everyone & there
> > > precious lil ones..Any advice anyone can give me regarding making
> it
> > > through the flu season, and fever's a little less stressfull I
> think
> > > I might just drive over and hug ya, lol best of wishes to all and
> > > have a great holiday season.
> > > ~Anna :o)
> > >
> > >
> > >
> > >
> ______________________________________________________________________
> __
> > >
> ______________________________________________________________________
> __
> > >
> > >
> > >
> > > 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/
>
>

Yeah I have the Dex Injection Kit, I didn't until his last episode
though, I live in a small town In Upstate NY, See his Endo is in
Syracuse but our local hospital is where I take him if there are any
problems, and on his last visit in there they seemed pretty clueless
as to how he needed to be treated. I had to have his endo call the
doc's here at our local hospital and talk them through his treatment
procedures.. well after having to do that I insisted that I have the
injection kit at home to save on the hassle of the 3 way call and the
informing process.. They didn't mention that there was a solu- cortef
injection kit, .. when I said that I would like the injecton he would
need they just prescribed the dex kit. And unless I actually open one
of the vials and use the required dose the shelf life on it says it's
good until 12/02, of course I have to throw away any unused portion
in the vial but it says it should be good until next year. Do you
know the difference between the two? If one is better than the other
I wish they would of told me. Im still learning as we go. good news
though he is feeling a bit better, wetting his diapers more and now
except for a nagging cough that gags him every now and then and
causes him to vomit he is good, his tummy is still a little off and I
think just coughing up the phlem is a bit much just yet, but his
fever seems to be fading slowly and he's just about back to his
normal happy go lucky self again. *sigh, whew! Im still finding it
amazing that local doctors are so unsure about adrenal patients, it
leaves me wondering if maybe I shouldn't move closer to his endo's,
but for now Im doing my best to educate myself and keep good records
of each visit to the hospital he may have. Now you got me wondering
why they gave him the dex and not the cortef kit though.Talk with you
soon. :o)
~Anna
-- In adrenal_hyperplasia@y..., "preston" <preston@K...> wrote:
> It is nice to hear from someone out there. I hate flu season. Do
you have
> the dex injection kit  - so do you just wait until the hospital
gives it? I
> have solu-cortef injections kits. I guess because it can be kept a
long time
> and it milder than the dex. But I wish the doctors would give the
dex
> because it is stronger. I live in Washington DC area. Where do you
live?
>
> Roberta
> ----- Original Message -----
> From: <adrenal_hyperplasia@y...>
> To: <adrenal_hyperplasia@y...>
> Sent: Monday, November 12, 2001 4:21 AM
> Subject: [adrenal_hyperplasia] Digest Number 89
>
>
> > There is 1 message in this issue.
> >
> > Topics in this digest:
> >
> >       1. Been Awhile
> >            From: "Anna" <anna26_2@y...>
> >
> >
> >
______________________________________________________________________
__
> >
______________________________________________________________________
__
> >
> > Message: 1
> >    Date: Mon, 12 Nov 2001 00:55:44 -0000
> >    From: "Anna" <anna26_2@y...>
> > Subject: Been Awhile
> >
> > Hi All, It's been ages since I've been in the group discussions,
with
> > my oldest son in school now and youngest just turning 2 I'm up to
my
> > elbows with stuff to do.. Well Bad news first Jacob has the flu
and
> > I'm finding it very nerve racking trying to determine wether he
is ok
> > or maybe I should take him in, or hmm is he wetting his diaper
enough
> > or am I just being paranoid.. Oye! I've been in constant contact
with
> > his endo and they seem to believe I have everything under control,
> > allot of help that is, Jacob had a bad spell a couple weeks back
with
> > a fever from an ear infection and he ended up in the ER having to
> > have 2 liters of IV to rehydrate him as well as an injection of
dex.
> > It seems this time around he is doing a bit better, Im doubleing
the
> > Cortef and he's getting fever meds, but trying to get him to want
a
> > drink and keep hydrated is not as easy as it seems it should be. I
> > went out and bought the Pedialyte pops but he says "ick" and
doesn't
> > want anything to do with them, luckily his appetite is still good
and
> > Im able to convince him every once & a while to have a regular pop
> > sickle, he is still attached to his bottle so I've had to water
down
> > his milk to that I say "ick" but he doesn't seem to mind, he wont
> > take juice from his cup or in his bottle so I'm just having to
watch
> > his diapers real close and I have his Dex Injection Out and ready
> > should I see any change in his attitude. Man oh man this is not
easy.
> >   We just had our first consultation appt. with the surgeon
regarding
> > his hypospadius repair and it looks like there shooting for this
> > spring, maybe April-May, Im all nervous about that, I just put it
out
> > of my mind for now it worries me allot and I prey that things
will be
> > ok for him. I've added a photo of him to the group albulm, he is
my
> > lil sweetheart, but don't let the smile fool ya he is soooo
stuborn
> > and believe me when I tell ya he is trouble with a capital T ,
lol..
> > I just wanted to pop in, hope all is well with everyone & there
> > precious lil ones..Any advice anyone can give me regarding making
it
> > through the flu season, and fever's a little less stressfull I
think
> > I might just drive over and hug ya, lol best of wishes to all and
> > have a great holiday season.
> > ~Anna :o)
> >
> >
> >
> >
______________________________________________________________________
__
> >
______________________________________________________________________
__
> >
> >
> >
> > Your use of Yahoo! Groups is subject to
http://docs.yahoo.com/info/terms/
> >
> >

It is nice to hear from someone out there. I hate flu season. Do you have
the dex injection kit  - so do you just wait until the hospital gives it? I
have solu-cortef injections kits. I guess because it can be kept a long time
and it milder than the dex. But I wish the doctors would give the dex
because it is stronger. I live in Washington DC area. Where do you live?

Roberta
----- Original Message -----
From: <adrenal_hyperplasia@yahoogroups.com>
To: <adrenal_hyperplasia@yahoogroups.com>
Sent: Monday, November 12, 2001 4:21 AM
Subject: [adrenal_hyperplasia] Digest Number 89


> There is 1 message in this issue.
>
> Topics in this digest:
>
>       1. Been Awhile
>            From: "Anna" <anna26_2@...>
>
>
> ________________________________________________________________________
> ________________________________________________________________________
>
> Message: 1
>    Date: Mon, 12 Nov 2001 00:55:44 -0000
>    From: "Anna" <anna26_2@...>
> Subject: Been Awhile
>
> Hi All, It's been ages since I've been in the group discussions, with
> my oldest son in school now and youngest just turning 2 I'm up to my
> elbows with stuff to do.. Well Bad news first Jacob has the flu and
> I'm finding it very nerve racking trying to determine wether he is ok
> or maybe I should take him in, or hmm is he wetting his diaper enough
> or am I just being paranoid.. Oye! I've been in constant contact with
> his endo and they seem to believe I have everything under control,
> allot of help that is, Jacob had a bad spell a couple weeks back with
> a fever from an ear infection and he ended up in the ER having to
> have 2 liters of IV to rehydrate him as well as an injection of dex.
> It seems this time around he is doing a bit better, Im doubleing the
> Cortef and he's getting fever meds, but trying to get him to want a
> drink and keep hydrated is not as easy as it seems it should be. I
> went out and bought the Pedialyte pops but he says "ick" and doesn't
> want anything to do with them, luckily his appetite is still good and
> Im able to convince him every once & a while to have a regular pop
> sickle, he is still attached to his bottle so I've had to water down
> his milk to that I say "ick" but he doesn't seem to mind, he wont
> take juice from his cup or in his bottle so I'm just having to watch
> his diapers real close and I have his Dex Injection Out and ready
> should I see any change in his attitude. Man oh man this is not easy.
>   We just had our first consultation appt. with the surgeon regarding
> his hypospadius repair and it looks like there shooting for this
> spring, maybe April-May, Im all nervous about that, I just put it out
> of my mind for now it worries me allot and I prey that things will be
> ok for him. I've added a photo of him to the group albulm, he is my
> lil sweetheart, but don't let the smile fool ya he is soooo stuborn
> and believe me when I tell ya he is trouble with a capital T , lol..
> I just wanted to pop in, hope all is well with everyone & there
> precious lil ones..Any advice anyone can give me regarding making it
> through the flu season, and fever's a little less stressfull I think
> I might just drive over and hug ya, lol best of wishes to all and
> have a great holiday season.
> ~Anna :o)
>
>
>
> ________________________________________________________________________
> ________________________________________________________________________
>
>
>
> Your use of Yahoo! Groups is subject to http://docs.yahoo.com/info/terms/
>
>

Hi All, It's been ages since I've been in the group discussions, with
my oldest son in school now and youngest just turning 2 I'm up to my
elbows with stuff to do.. Well Bad news first Jacob has the flu and
I'm finding it very nerve racking trying to determine wether he is ok
or maybe I should take him in, or hmm is he wetting his diaper enough
or am I just being paranoid.. Oye! I've been in constant contact with
his endo and they seem to believe I have everything under control,
allot of help that is, Jacob had a bad spell a couple weeks back with
a fever from an ear infection and he ended up in the ER having to
have 2 liters of IV to rehydrate him as well as an injection of dex.
It seems this time around he is doing a bit better, Im doubleing the
Cortef and he's getting fever meds, but trying to get him to want a
drink and keep hydrated is not as easy as it seems it should be. I
went out and bought the Pedialyte pops but he says "ick" and doesn't
want anything to do with them, luckily his appetite is still good and
Im able to convince him every once & a while to have a regular pop
sickle, he is still attached to his bottle so I've had to water down
his milk to that I say "ick" but he doesn't seem to mind, he wont
take juice from his cup or in his bottle so I'm just having to watch
his diapers real close and I have his Dex Injection Out and ready
should I see any change in his attitude. Man oh man this is not easy.
   We just had our first consultation appt. with the surgeon regarding
his hypospadius repair and it looks like there shooting for this
spring, maybe April-May, Im all nervous about that, I just put it out
of my mind for now it worries me allot and I prey that things will be
ok for him. I've added a photo of him to the group albulm, he is my
lil sweetheart, but don't let the smile fool ya he is soooo stuborn
and believe me when I tell ya he is trouble with a capital T , lol..
I just wanted to pop in, hope all is well with everyone & there
precious lil ones..Any advice anyone can give me regarding making it
through the flu season, and fever's a little less stressfull I think
I might just drive over and hug ya, lol best of wishes to all and
have a great holiday season.
~Anna :o)

I work for the Air Force at the Pentagon but I am not home on maternity...
thank god!! And my three year was not at the Pentagon Daycare but it was
safe and my co-workers are okay, too.

Roberta
----- Original Message -----
From: <adrenal_hyperplasia@yahoogroups.com>
To: <adrenal_hyperplasia@yahoogroups.com>
Sent: Saturday, September 08, 2001 7:03 AM
Subject: [adrenal_hyperplasia] Digest Number 87


>
> There is 1 message in this issue.
>
> Topics in this digest:
>
>       1. HELLO
>            From: "Nancy Carwile" <nancyl@...>
>
>
> ________________________________________________________________________
> ________________________________________________________________________
>
> Message: 1
>    Date: Sat, 8 Sep 2001 01:56:28 -0500
>    From: "Nancy Carwile" <nancyl@...>
> Subject: HELLO
>
> HELLO TO EVERYONE;;
>
> My Name is  Nancy,  I am new to this Board.
>
> My Primary is Addison's,  I also have Asthma,
>
> Fibromyalgia, Thyroid Disfunction,
>
> I Broke my Ankle, in DEC.  I was just beginning
>
> to feel better after that,  Then I came down with
>
> Pneumonia,  and have been battling this for a
>
> while now,  My White Blood Cells are still too
>
> high,  So I am waiting on the last Blood Test,
>
> If they are still too high, I don't know what the
>
> Doctor is going to do.  I have had chills and a
>
> sore throat all day, today,   Now my right knee
>
> is swollen, my Drs. think I have pulled a Tendon,
>
> It seems to be one thing after another.
>
> I just wanted to say hello, and hope to get some
>
> response from some one else, about Addison's
>
> or other related medical issues.
>
> Thanks for listing,
>
> Your Friend
>
> Nancy
>
>
> [This message contained attachments]
>
>
>
> ________________________________________________________________________
> ________________________________________________________________________
>
>
>
> Your use of Yahoo! Groups is subject to http://docs.yahoo.com/info/terms/
>
>

exactly.... and it is struggle to keep the med (cortef) balanced... and
always be careful about adrenal crisis... here is a web site that is in
memory of a young man that died from an adrenal crisis . So it can happen at
any age. My daughter died at age 2 from an adrenal crisis and fever. The
nurse tells me ... that it happened because she was so young.. not true. It
just happened because I trusted the doctors and she like DJ was not managed
right. I called the doctor the night Jessica was sick ... the doctor said to
double the cortef and stop calling him and in the morning she was in shock.
She die 1 Sept 97. In a coma and after heart stopped in the ER ... they had
her on a respirator for two days. Jessica was born 17 Jan 1995. Beautiful
black hair and blue eyes.

http://www.geocities.com/Heartland/Canyon/7906/

This site is in "LOVING MEMORY OF DOUGLAS RAY JESTER JR", or D.J. as we his
family called him.Born Feb.7,1978-Mar.26,1999. I want to welcome everyone
and hope you find this site helpful and informative.I want to start off with
information on the disease that caused D.J. to lose his life.
The disease is called Congenital Adrenal Hyperplasia.What it does is effect
the manufacture of the "Stress" hormon Cortisol. Cortisol is produced by the
Adrenal gland a small organ near the kidneys.It occurs in two forms
Severe(Salt Wasting)and Mild(Non-salt wasting). In the Salt Wasting type the
deficiency is more severe than the non-salt wasting.Their strong tendency to
lose excessive amounts of salt in the urine(due to absence of the salt
retaining hormone Aldosterone), if uncontrolled, can cause acute
dehydration,very low blood pressure,nausea and vomiting.The levels of salt
(sodium and chloride)and sugar(glucose) in the blood fall, and the potassium
level rises. This dangerous situation is referred to as an "Adrenal Crisis".
It is very Urgent to get medical treatment, for this is a life threating
situation. Non-salt wasters hardly ever experience adrenal crisis, due to
their bodies making more Cortisol and Aldosterone than salt wasters.
D.J. was a salt- waster, and his CAH was controlled by medications. Their
are several different kinds of these medications and the doctors just kept
trying different ones until they found the one that worked best for him. He
was taking Dexamethazone and Florinef.

D.J. wasn't taking his medication like he should have been, and in March he
became ill with a virus and pneumonia which caused him to go into a Adrenal
crisis.
While laying on the couch at home he went into full arrest. When he arrived
at the hospital by EMS, he already had damage to his brain that caused his
heart rate and blood pressure to drop, his temperature was only 82 degrees,
and his respirations were way below normal. He was placed on life support
and started on several different medications for heart rate, blood pressure,
and his CAH. He remained on life support until the next day when he kept
going into full arrest every 30 min. to an hour.
The medications were no longer working.We were asked if he was an Organ and
Tissue donor, not ever having discussed this issue, we as a family had to
make the choice on our own. We decided that being the caring person D.J. was
that he would of wanted it that way, so we had life support removed and let
him give life to another. That was the hardest thing I've ever had to do in
my life. I feel that if I had discussed the issue with my son and heard his
voice say "If anything ever happens to me mom, let me give life to another",
it would be easier to live with. So if you've not talked with your loved
ones and made your wishes known, Please do so. We were told that if one
family member said no, they couldn't let him be a donor.
Hopefully you'll never have to go through something like this, but if you do
you will know what your loved one would have wanted. I have spoken with
several mothers who chose to let thier child give life to another,and still
they wonder "Did I make the right choice."

D.J. was down visiting with us the week-end before his death. He was his
normal happy go lucky self that day.My grandson has a cat out here that he
tugs around all over the place, the cat got away from him and went under the
barn, well Ethan followed the cat and got stuck. He screamed like something
terrible was wrong, by the time we got him out (he was mad cause he had dirt
in his mouth)I was shaking,laughing and crying all at the same time. On the
way back to the house D.J. said "chill out Mom, everything is alright". I
told him and his sister I couldn't handle it if anything was to ever happen
to any of my babies, and he told me I worried to much.
I don't think I worried enough. Oh I worried about him taking his medicine
and I was always telling him about it and he would say "I'm taking my
medicine, just sometimes I forget." He had lost alot of weight and he had a
really dark tan.His excuse was he ran alot at work and was outside all the
time, both statements were true. But now I can look back and see that it was
from not taking his meds right and his CAH not being controlled. There were
alot of signs.

The last day I spent with D.J. he was telling me that he had spells (as he
called them) where his mind just went blank.He said he didn't pass out or
anything like that, he just went blank for a few minutes.Also he talked
about being hungry all the time, couldn't seem to get enough to eat. He also
said at times he felt like "my insides are quivering". I asked him to
explain what he was talking about and he said that was the only way he could
explain it, "just feels like all my insides are quivering".
When I look back now, I can see that alot of it (I believe) had to do with
his CAH not being under control. He was most usually a happy go lucky guy,
but he did have times when he was moody or down in the dumps. He also was
forgetful, and had headaches alot. He always said they were sinus headaches,
but after reading some of the stuff on the message board, I tend to feel
that they were due too CAH.


When I go look at the messages, it almost seems like I'm looking at D.J.s'
life. If you are interested in learning more about CAH, or have questions
the message board is a good place to go and take a look, there you will find
that parents are noticing things that are simular in CAH children.

If you have any questions or if you know about CAH and have something you
feel needs to be added please feel free to email me or leave a message in
the guestbook. I feel you can never have to much information about something
that affects your children and if you've been through it, maybe your
information can help someone else.


----- Original Message -----
From: <adrenal_hyperplasia@yahoogroups.com>
To: <adrenal_hyperplasia@yahoogroups.com>
Sent: Thursday, September 06, 2001 7:24 AM
Subject: [adrenal_hyperplasia] Digest Number 85


>
> There is 1 message in this issue.
>
> Topics in this digest:
>
>       1. Re: clitoplasty
>            From: "Anne S." <redheada@...>
>
>
> ________________________________________________________________________
> ________________________________________________________________________
>
> Message: 1
>    Date: Wed, 5 Sep 2001 18:07:43 -0700 (PDT)
>    From: "Anne S." <redheada@...>
> Subject: Re: clitoplasty
>
> My daughter is 9 1/2 - had surgery several years ago.
> I am finding much bigger issues with her height/weight
> than any other "appearance."
>
>
>
> --- JHmphr3@... wrote:
> > Thank you so much for your point of view. It is rare
> > that I get to speak with
> > someone that has cah themselves. My main concern
> > with the surgery is whether
> > or not my daughter will have feeling afterwards. I
> > wouldn't want to do this
> > if it came at the expense of pleasure in her adult
> > life. Once again thank you
> > very much.
> >        Jenny
> >
>
>
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My daughter is 9 1/2 - had surgery several years ago.
I am finding much bigger issues with her height/weight
than any other "appearance."



--- JHmphr3@... wrote:
> Thank you so much for your point of view. It is rare
> that I get to speak with
> someone that has cah themselves. My main concern
> with the surgery is whether
> or not my daughter will have feeling afterwards. I
> wouldn't want to do this
> if it came at the expense of pleasure in her adult
> life. Once again thank you
> very much.
>        Jenny
>


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--- melmikmol@... wrote:
> Must've missed something...is there a picinic at
> Stevens Point?  Thanks.
>

Yes there is on the 24 of this month

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Must've missed something...is there a picinic at Stevens Point?  Thanks.

TO Laurel,

   I was would like to know if the maps where sent out yet?Who called
my P.O.

Don't mean to offend anyone, but I have never heard about any child feeling
raped.  My daughter had 2 surgeries performed on her at 3 mos. and 18 mos.
She looks like any other little girl now.  Save your daughter the
embarrassement, get it done now.  Children can be so cruel.  If your dr.
recommended it, she needs it.  CAH girls, when born, do not look like other
newborne babies.  Do it, she'll thank you later.

----- Original Message -----
From: "karen lange" <kmlange27@...>
To: <adrenal_hyperplasia@yahoogroups.com>
Sent: Tuesday, August 14, 2001 6:34 AM
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
>
>
> __________________________________________________
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>
>
>

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/
>
>