Dear Roberta:

How horrible. I can't even image. Sometimes this board scares me when I
read of those sort of things, but I try to use it also as a wake-up call, to
never take their health for granted. I have a 6 year old girl, born w/CAH,
salt-wasting. Thankfully, she has been very healthy and has had only one
adrenal crises at age 3, rotavirus, vomiting w/diarrhea. When she couldn't
keep down her oral cortef, we did not hesitate to give her an injection.
She, so to speak, came back to life, and we admitted her in Children's
Hospital for observation and mild dehydration. I have been taught, from day
one, more is always better when in doubt (meds), and it will not harm the
child. With high fevers, her meds should have been tripled, and if that
didn't work, an injection surely would have been the right thing to do. I
have wonderful, knowledgeable pediatricians and endocrinologist where I
live, but I also rely on my gut instinct to tell me what to do in a
potential serious situation. Only we know our children, better than the
doctors, on how to react in situations like that.

Also, if you haven't already heard, the liquid cortef has had major
problems. If not shaken very well, at each dosage, your child is not
getting the full potentency that he/she needs to be receiving. Since that
news, our doctor as put my daughter on cortef pills. She still has not
learned how to swallow them w/water. So we take a piece of banana and stick
the pill(s) in the banana and she eats it up with no problem. Please
discuss this w/your doctors, the liquid cortef is no longer reliable.

Again, I am so sorry for your loss. I don't know how you got through that
ordeal. If anything ever happened to my daughter, I would just want to die.
I hope your boys are doing well.

Debbie.
----- Original Message -----
From: preston <preston@...>
To: <adrenal_hyperplasia@egroups.com>
Sent: Tuesday, August 01, 2000 9:55 PM
Subject: Re: [adrenal_hyperplasia] Digest Number 4


> My name is Roberta - I have two children with CAH (boys). My daughter
> (second child) died at age 2 and 1/2 years old. She had a fever and the
> doctor on call insisted that doubling the oral cortef was enough. It
wasn't
> and in the morning she was in shock and her heart failed in the ER and
they
> revived her but it took 45 minutes (1 Sept 1997). She was born in 1995
with
> CAH. The liquid cortef was not helping her. She had been lossing weight,
and
> vomiting for months and the doctor would not prescribe the cortef in pill
or
> injection and this is 1997 and NOT 1957!! The Grace of God! You are
alive!!
> So Denise when you are blue and sad - think of Jessica in Heaven. At least
> God gave you a chance to live.
>
> Roberta
> ----- Original Message -----
> From: <adrenal_hyperplasia@egroups.com>
> To: <adrenal_hyperplasia@egroups.com>
> Sent: Monday, July 31, 2000 4:04 AM
> Subject: [adrenal_hyperplasia] Digest Number 4
>
>
> >
> >
> > There are 3 messages in this issue.
> >
> > Topics in this digest:
> >
> > 1. New member
> > From: "Denise G." <Breezy6692@...>
> > 2. Re: Denise
> > From: "Anna " <almiller@...>
> > 3. Re: CAH Reply
> > From: "Denise G." <Breezy6692@...>
> >
> >
> > ________________________________________________________________________
> > ________________________________________________________________________
> >
> > Message: 1
> > Date: Sat, 29 Jul 2000 16:33:29 -0000
> > From: "Denise G." <Breezy6692@...>
> > Subject: New member
> >
> > Hi, I was born with the classical salt wasting CAH 45 years
> > ago,when not much was known about this illness.Growing up was not fun
> > at all. My mother and father were divorced and she had to work to
> > make a living.Then came all kinds of baby sitters and by the time I
> > started school I was called some horrible names because ppl said I
> > was half boy and half girl. What a childhood ! Dogs and other animals
> > were my only friends and consulation. Being in hospitals for weeks at
> > a time were a big part too. I remember as a child sneaking into the
> > nurses charts and seeing mine, and I read a part that said I was not
> > like other girls. That stayed with me to this day. It was a teaching
> > hospital so there were many interns around. One day , I was 5 years
> > old, by myself, and this group of drs. were with me in the exam room,
> > One of them ( a male) left saying , qoute- I cant saty here)
> > unquote,,, a lady dr. went after him and I heard her tell him, She's
> > only 5 years old for God's sake !
> >
> >
> >
> >
> > ________________________________________________________________________
> > ________________________________________________________________________
> >
> > Message: 2
> > Date: Sun, 30 Jul 2000 12:56:38 -0000
> > From: "Anna " <almiller@...>
> > Subject: Re: Denise
> >
> > I could not begin to imagine how hard it must have been for you
> > having to try and deal with so many issues at such a young age. Not
> > to mention having to go through all of it in a time when there was
> > still so much about this disease that was unknown. Just this morning
> > my husband and I were discussing our son Jacob's upcoming surgery,
> > and all of the stress and anxiety associated with it, and I must say
> > your post arriving when it did gave us reason to step back , to look
> > at the overall situation of so many others who have had to go through
> > so much more..It's too easy for us to say that our own situation is
> > bad until we take a brief look into the lives of others, and then
> > realize that there struggles and hardships out-wiegh our own.
> > For all it is worth, I wish it could have been better for you..
> > You must be a very strong person, I envy that.. Take care and Stay
> > Safe.. :-)
> > Anna
> >
> >
> >
> >
> > ________________________________________________________________________
> > ________________________________________________________________________
> >
> > Message: 3
> > Date: Sun, 30 Jul 2000 16:18:00 -0000
> > From: "Denise G." <Breezy6692@...>
> > Subject: Re: CAH Reply
> >
> > --- In adrenal_hyperplasia@egroups.com, "Anna " <almiller@c...> wrote:
> > > I could not begin to imagine how hard it must have been for you
> > > having to try and deal with so many issues at such a young age.
> > Not
> > > to mention having to go through all of it in a time when there was
> > > still so much about this disease that was unknown. Just this
> > morning
> > > my husband and I were discussing our son Jacob's upcoming surgery,
> > > and all of the stress and anxiety associated with it, and I must
> > say
> > > your post arriving when it did gave us reason to step back , to
> > look
> > > at the overall situation of so many others who have had to go
> > through
> > > so much more..It's too easy for us to say that our own situation is
> > > bad until we take a brief look into the lives of others, and then
> > > realize that there struggles and hardships out-wiegh our own.
> > > For all it is worth, I wish it could have been better for you..
> > > You must be a very strong person, I envy that.. Take care and Stay
> > > Safe.. :-) God bless you Anna for your reply and
> > concern. We all have our cross to bear and each one is heavy enough
> > for us.It doesn't lesson burdens in life because one seems harder
> > than the next.I don't think life's crosses can be harder than when it
> > affects your child. No need to envy(lol) it's not that I'm a strong
> > person, but only by the grace of God I managed.There's many more
> > things I could say, but I have never spoken out about this cah thing
> > before, and not quite comfortable to do it now. I wonder if Dannette
> > relizes ( cant spell lol) the good she did by opening up this cah
> > board. She's the real strong person. I couldn't have done it.Anyways
> > may God be with you and husband and son now and in your son's
> > surgery. Denise
> >
> >
> >
> > ________________________________________________________________________
> > ________________________________________________________________________
> >
> >
> >
> >
>
>
>
>
>
>
>
>