Did anyone read about the experimental cure for diabetics. They transplant
eyelet cells and then the diabetic does not need medication anymore. I
wonder if that would work for the adrenal gland too.

Roberta
preston@...
----- Original Message -----
From: <adrenal_hyperplasia@egroups.com>
To: <adrenal_hyperplasia@egroups.com>
Sent: Thursday, August 03, 2000 4:10 AM
Subject: [adrenal_hyperplasia] Digest Number 6


>
>
> There are 2 messages in this issue.
>
> Topics in this digest:
>
> 1. Re: Digest Number 4
> From: "Debbie Doyle" <doyle@...>
> 2. Re: Digest Number 4
> From: Breezy6692@...
>
>
> ________________________________________________________________________
> ________________________________________________________________________
>
> Message: 1
> Date: Wed, 2 Aug 2000 07:45:16 -0400
> From: "Debbie Doyle" <doyle@...>
> Subject: Re: Digest Number 4
>
> 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
> > >
> > >
> > >
> > >
________________________________________________________________________
> > >
________________________________________________________________________
> > >
> > >
> > >
> > >
> >
> >
> >
> >
> >
> >
> >
> >
>
>
>
>
> ________________________________________________________________________
> ________________________________________________________________________
>
> Message: 2
> Date: Wed, 2 Aug 2000 10:54:09 EDT
> From: Breezy6692@...
> Subject: Re: Digest Number 4
>
> Roberta, I'm so sorry for the great loss of your daughter you are
> suffering. Liquid Cortif was not available back in the 50's and thank God
it
> wasn't. From all I been reading on the internet about it, it seems Liquid
> cortif has been recalled for its ineffectiveness. I'm sorry if I have been
> givivng the impression that I am sad and blue.I am far from it. This is
the
> first time after all these years I am able to talk about cah with ppl who
> have it and understand what it is. Yes, by the grace of God, I am alive
> today, and grateful.But I don't see death as an end, since death brings
one
> back to our creator. So, I'm happy to be alive and at the same time,some
> things are worse than death it self. I will think about your daughter in
> heaven, for surely she is a saint now. I will not post anymore, as I do
not
> want to scandilize anyone with missrepretintations. May the good Lord
bless
> you and your family and keep you all in his peace. Denise
>
>
>
> ________________________________________________________________________
> ________________________________________________________________________
>
>
>
>