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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