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/
> > > >
> > > >
> >
> >
> >
> >
______________________________________________________________________
__
> >
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> >
> >
> >
> > Your use of Yahoo! Groups is subject to
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> >
> >