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/
> > >
> > >
>
>
>
> ________________________________________________________________________
> ________________________________________________________________________
>
>
>
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