P.s.. take note , though many states claim to test for CAH, there
are many counties within those states that are not adhearing to these
standards. This is what I meant when I said we need to change these
regulations.. Our county our child was not tested, his newborn
screening came back Normal! thats the issue. chilling!--- In
adrenal_hyperplasia@y..., "Anna" <anna26_2@y...> wrote:
> 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/
> > > > >
> > > > >
> > >
> > >
> > >
> > >
>
______________________________________________________________________
> __
> > >
>
______________________________________________________________________
> __
> > >
> > >
> > >
> > > Your use of Yahoo! Groups is subject to
> http://docs.yahoo.com/info/terms/
> > >
> > >