I hope that everyone is feeling better and the baby doesn't get sick. The
doctor should have told you about solu-cortef. It is an injection of cortef
for a fever or vomiting. DO NOT believe the doctor if he or she saying that
you don't need it and that all you need to do is go to the emergency room.
I baby or toddler with a fever or severe vomiting can die and the ambulance
and emergency room won't just have solu-cortef right at their finger tips.
By the time that they order it and figure out what it is your daughter will
die.

Yes 101 degree fever is the guideline to triple the cortef but for an older
child. A baby with or without CAH can die from a 101 fever is very serious.
A baby does not have a mature system to fight a fever. You must give tylenol
or motrin and if the fever does not go down below 99 degree within 30 or 45
minutes then you must give the injection and get IV fluids to prevent
dehydration. Dehydration and lack of cortisol will cause an adrenal
shock... if you wait too long... the brain can be damaged... the heart will
stop and your baby will die. Your baby needs 4 to 10 times the amount of
cortisol than normal during a fever. If the baby is sleeping ... set your
alarm and continue to give the tylenol as prescribed by the doctor - every
four (I believe... it is longer for motrin). But if the fever spikes up
between the dosage... it would immediately give the injection and go to the
hospital for IV fluids. Do not think that the baby need sleeps or you can
give too much cortef.... you can not give too much cortef but if you do not
give enough... she can die from adrenal shock... low blood pressure, lack of
salt and sugars, coma, and the heart stops.

Sadly I know because my two year old daughter died from adrenal shock. The
doctor insisted to just double the cortef during a fever. In the morning she
was in a shock and coma and after two days in the PICU... she was brain
dead. Jessica would have been 6 years old in January and in school with her
brother, Stephen.

Say you gave her cortef at 7 am... and she gets a fever at 10am.... DO NOT
WAIT UNTIL 3PM to triple the cortef. Give the extra cortef immediately!!!
Give the tylenol or motrin immediately... write down the time of the dosages
of tylenol and cortef... repeat the cortef every six hours during an illness
(first 48 hours is important). Push fluids. If she is not drinking... and
sleeping too much... go to the hospital. She could be in a coma. Call an
ambulance if no one will take you to the hospital. Again a fever is very
serious for a newborn with CAH. It can cause coma and death. The blood
pressure and oxygen levels should be monitored in the hospital (and heart
rate). They should take blood tests to look at the cause of the infection
and look at the sodium and sugar levels... especially if she is not drinking
or urinating.... and is sleeping too much.

Roberta Preston
preston@...

By the way... LOL means laughing Out Loud
MIL... is mother in law.... and the two are usually together in one sentence
because believe me most MILs and too funny!! Forget about you MIL and enjoy
your new baby!!

If you need anything... you can call me 703 695-4512 at work or 703
370-4611. But don't try to wait for a doctor to tell you what to do over
the phone.... minutes count!!! And a doctor can not see what the child looks
like over the phone.... you must know how to give the solu-cortef.

If you do not know how to give the solu-cortef injection... you must learn
how in case of a fever or vomiting (or loose bowels). I can mail you
pamplets that show how to give the injection. It is very important that you
know how to give it.

You daughter should not die from CAH if you give the injection and extra
cortef for a fever or vomiting (also give the cortef/florinef and salt
supplements on schedule) .... she should be a normal child in every way. My
seven year old and two year old have CAH and they are fine.




----- Original Message -----
From: <CAHsupport@yahoogroups.com>
To: <CAHsupport@yahoogroups.com>
Sent: Sunday, March 25, 2001 4:02 AM
Subject: [CAHsupport] Digest Number 67


>
> There are 5 messages in this issue.
>
> Topics in this digest:
>
> 1. To Angela
> From: "Jenny Humphrey" <JHmphr3@...>
> 2. any tips on giving salt supplement?
> From: "Jenny Humphrey" <JHmphr3@...>
> 3. Re: Digest Number 66
> From: jenannlynn@...
> 4. Re: Digest Number 66
> From: "preston" <preston@...>
> 5. Re: Digest Number 66
> From: JHmphr3@...
>
>
> ________________________________________________________________________
> ________________________________________________________________________
>
> Message: 1
> Date: Sat, 24 Mar 2001 14:02:23 -0000
> From: "Jenny Humphrey" <JHmphr3@...>
> Subject: To Angela
>
> Thank you for responding. It feels really well to know that there
> are others that are or have been going through the same thing that we
> are. The more explaining I've done the better my family memembers are
> doing. With the exception of my mother in law. She is certain that
> there is nothing like this on her side of the family so she doen't
> see how Jason (my husband) could have possibly been a carrier. I hope
> she doesn't remain so closed minded. Any ways I have a question about
> my girls. My two year old is sick with a cold right now and I am
> beside myself trying to keep her away from Hunter. I am enough of a
> worry wart when the elder gets sick and I know I would go crazy if
> Hunter got sick. Any ways how specific are the guide lines to when
> you triple the steriod? My endo gave me a list but it basically says
> when she vomits gets a fever of 101 and other traumatic things. From
> reading some of the posts I feel like there probably is a thinner
> line than I orginally thought. Will a nasty cold affect her or only
> if she becomes feverish. Also a really silly question, a lot of you
> use LOL alot. What does this stand for? Well thank you again for your
> response and I am sorry if my questions are meanial I just want to
> know all I can.
> Thanks,
> Jenny H
>
>
>
> ________________________________________________________________________
> ________________________________________________________________________
>
> Message: 2
> Date: Sat, 24 Mar 2001 14:24:02 -0000
> From: "Jenny Humphrey" <JHmphr3@...>
> Subject: any tips on giving salt supplement?
>
> Hello. This is Jenny H. I just wondered if any of you had any tips on
> getting your baby to take the sodium chloride supplement. Hunter
> takes both her steriod and florinef with no problems but hates the
> salt stuff and of course that is the one she has to take tid. Right
> now when it comes to med time we give her the first two by having her
> suck on my finger and squeezing them in the corner of her mouth. We
> tried this with the salt with no luck. So we tried squeezing it in
> while she is drinking her bottle. Which works ok, she takes it all,
> but right afterwards she gets the taste in her mouth and refuses to
> eat any more. I've been trying to wait until I think she is close to
> being done then give it to her but I really think there has to be an
> easier way to do this one. At least she won't have to be on this one
> forever they think only a year or so when she starts eating other
> food. I had to get title 19 insursance and I am so glad I did. I
> picked up her meds at the hospital after she was born and this sodium
> chloride which they said is basically salt water, cost $255 for a
> month supply!!!! And I suppose they just get more expense as they get
> older and take larger doses. I appreciate any advice you guys have.
> Thanks,
> Jenny H.
>
>
>
> ________________________________________________________________________
> ________________________________________________________________________
>
> Message: 3
> Date: Sat, 24 Mar 2001 11:01:04 EST
> From: jenannlynn@...
> Subject: Re: Digest Number 66
>
> <A HREF="http://www.congenitaladrenalhyperplasia.org/">Congenital Adrenal
Hyperplasia dot Org -- A Family Education and Support
> Networ</A> <A HREF="http://www.rch.unimelb.edu.au/CAH/">Congenital
Adrenal Hyperplasia Support Group</A> <A
HREF="http://www.insidetheweb.com/mbs.cgi/mb1095500">CONGENITAL ADRENAL
> HYPERPLASIA OUR LIFE STORIES</A> <A
HREF="http://www.cahourstories.net/">cah our voice and our stories</A> <A
HREF="http://www.magicfoundation.org/">The MAGIC
> Foundation Homepage</A> <A
HREF="http://www.med.jhu.edu/pedendo/cah/index.html">Congenital Adrenal
Hyperplasia Due to 21-Hydroxylase
> Deficiency</A>
> Here are several of my accumulated webpages that have helped to educate me
> and my family on CAH. (There are quite a few more) My daughter (now 1
yr.
> old) was not diagnosed until she was 9 months old, so her masculinization
was
> not as severe (they thought she was swollen from hormones), but my heart
goes
> out to those of you who had to deal with this since the birth of your baby
> girls. Still, be grateful you know what it is this early--my daughter's
life
> was risked by not knowing earlier, because of all the sickness that
followed
> by not being diagnosed. It is a blessing in disguise. :)
> As for the relatives, they will need to be educated and learn about CAH to
> truly understand. I have relatives who still believe my daughter is "more
> sickly" than their kids, and she isn't. She is a normal little girl as
long
> as she stays on track with her medicine. Her CAH is no more a handicap
than
> my bad eyesight is. You will find you get over one hill, and then have to
go
> over another with this. But in the end, it will make us all better people
> and stronger people through these experiences with our kids. I truly
believe
> we will not be given anything in life that we can't handle.
> Good luck, and welcome to the group!
> Jenny
>
>
> [This message contained attachments]
>
>
>
> ________________________________________________________________________
> ________________________________________________________________________
>
> Message: 4
> Date: Sat, 24 Mar 2001 20:19:25 -0500
> From: "preston" <preston@...>
> Subject: Re: Digest Number 66
>
> I don't know the link to the book that is listed but here is a good link
to
> a pamphlet about how to give the solu-cortef injection for fever,
vomiting,
> injury - which is important, especially with a newborn with CAH. Never
take
> a fever for granted!! A fever can kill you baby.
>
> http://www.rwi.nch.edu.au/endcond/httoc.htm
>
> If you can't get the link to open or whatever - email me and I will mail
you
> a copy. I hope that the doctors gave you instructions about the
solu-cortef
> and you have it with you at all times. A baby less than 3 months with any
> kind of fever can be very serious. I waited until my son (now almost 3
> years old with CAH was over 1 year to get the baby shots that cause fever,
> but I was so scared because we had a daughter die from a fever and adrenal
> crisis at age 2. The doctor should have told me to give the injection. He
> insisted to just double the cortef, but in the morning she was in shock
and
> died. Please be careful with your daughter and fevers. If she vomits =
> wait 30 minutes and give double dose of cortef. If she has repeated
vomiting
> (vomits twice)- give the injection and go to the hospital for IV fluids.
> Also give the injection if she has loose bowel movements (5 or more - I
> would really rush to the hosptial to get an IV). Dehydration is a big
> concern.
> Congrats! with a new baby!! I have a 7 year old son with CAH, Stephen, and
> Adam (almost 3 years old) with CAH. I am pregnant and will have a baby -
due
> 8 August. He will not have CAH (genetic testing). My daugther, Jessica,
was
> my second child with CAH. I took dex (a form of cortef) and she did not
> need surgery.
>
> Take sure that the doctor take chem 8, plasma renin, and 17OHP blood tests
> frequently for your daughter (as a newborn - I had it done monthly. You
> must watch the 17OHP very carefully. The 17 OHP is more important than the
> sodium levels. She must get enough cortef or she could go into shock.
> REMEMBER WITH FEVER = GIVE THE CORTEF IMMEDIATELY - DO NOT WORRY ABOUT
OVER
> DOSING. You can not give too much cortef for during a fever but if you do
> not give enough she can die. Don't think the ambulance will come or you
can
> get to the hospital in time. You must know how to give the injection. Do
> not wait!!
>
> I put 1/8 tsp salt in my son baby bottles - 5 times a day as a newborn.
> With breast feedings, you must give salt solution. As she gets older, she
> can have the florinef reduced and have table salt in her baby food.
>
> Roberta Preston
> preston@...
>
> Here is a picture of my boys from last year.... they are doing fine.
>
>
>
>
>
> ----- Original Message -----
> From: <CAHsupport@yahoogroups.com>
> To: <CAHsupport@yahoogroups.com>
> Sent: Saturday, March 24, 2001 3:03 AM
> Subject: [CAHsupport] Digest Number 66
>
>
> >
> > There are 2 messages in this issue.
> >
> > Topics in this digest:
> >
> > 1. My newborn was just diagnosed
> > From: "Jenny Humphrey" <JHmphr3@...>
> > 2. Re: My newborn was just diagnosed
> > From: "Angela Strong" <jaade1@...>
> >
> >
> > ________________________________________________________________________
> > ________________________________________________________________________
> >
> > Message: 1
> > Date: Fri, 23 Mar 2001 16:17:33 -0000
> > From: "Jenny Humphrey" <JHmphr3@...>
> > Subject: My newborn was just diagnosed
> >
> > Hello everyone. My name is Jenny and I just had my second daughter on
> > March 16th. The doctors initally told us that she was a boy. Shortly
> > afterwards they told us they didn't know yet. The next couple days
> > were full of anguish, confusion, and many tests. They finally came to
> > us and told us our baby was a little girl and she had the severe salt
> > wasting form of CAH. This was something my husband and I had never
> > heard of and didn't know we were carrying. We have read much
> > information since then and the doctors have been excellent but I
> > would like to hear from people that have lived through this either
> > themselves or with thier child. There are just some things books
> > can't tell you. Our family members are having a hard time
> > understanding this as they were all at the hospital when they said it
> > was a boy. They think that there is something sexually wrong with her
> > like she is a hermaprodite. Not all of them are like that but a few.
> > I am not sure how to deal with them other than to try to educate them
> > more. Mainly I would like to hear from others in a similar situation
> > and hear how your lives have changed and much more. I worry so much
> > about my daughter( whom we named Hunter) and want to be sure that I
> > do everything in my ability to let her live a happy and healthy life.
> >
> >
> >
> > ________________________________________________________________________
> > ________________________________________________________________________
> >
> > Message: 2
> > Date: Fri, 23 Mar 2001 13:20:34 -0500
> > From: "Angela Strong" <jaade1@...>
> > Subject: Re: My newborn was just diagnosed
> >
> > Hi Jenny!
> > Welcome to the group. We're a quiet bunch, but questions never go
> > unanswered.
> > My twin girls were diagnosed the day after their birth. They
> wouldn't
> > tell us their sex until after the sonogram and chromosone analysis.
> Because
> > they were premature, the masculinization (word?) wasn't as severe, so we
> > were pretty sure they were girls. I would suggest you get this book "My
> > child with CAH" (does anyone have the link? I seem to have momentarily
> lost
> > it.) It would be wonderful to help explain this all to your family.
(It
> > explains everything in plain English...very easy to read.)
> > I know just how you are feeling, as does everyone on this loop. We
> > were all scared and full of anxiety (and occasionally have our moments
> > still) at first. But as you learn more, and you will, you will become
> much
> > more confident with this diagnosis. My girls are leading an extremely
> > active and NORMAL life,....except this whole early puberty thing caught
me
> a
> > little off guard! LOL!! My girls are 12 now, are into Girl Scouts,
> Soccer,
> > Band, and being pre-teens....that one I could do without! LOL!
> > If someone doesn't come through with that link for you, I will
check
> > it out in the archives of this list and get back to you. I know you'll
> want
> > to have a copy of it!
> > Again, welcome to the group!
> >
> > Angi
> >
> > ----- Original Message -----
> > From: "Jenny Humphrey" <JHmphr3@...>
> > To: <CAHsupport@yahoogroups.com>
> > Sent: Friday, March 23, 2001 11:17 AM
> > Subject: [CAHsupport] My newborn was just diagnosed
> >
> >
> > > Hello everyone. My name is Jenny and I just had my second daughter on
> > > March 16th. The doctors initally told us that she was a boy. Shortly
> > > afterwards they told us they didn't know yet. The next couple days
> > > were full of anguish, confusion, and many tests. They finally came to
> > > us and told us our baby was a little girl and she had the severe salt
> > > wasting form of CAH. This was something my husband and I had never
> > > heard of and didn't know we were carrying. We have read much
> > > information since then and the doctors have been excellent but I
> > > would like to hear from people that have lived through this either
> > > themselves or with thier child. There are just some things books
> > > can't tell you. Our family members are having a hard time
> > > understanding this as they were all at the hospital when they said it
> > > was a boy. They think that there is something sexually wrong with her
> > > like she is a hermaprodite. Not all of them are like that but a few.
> > > I am not sure how to deal with them other than to try to educate them
> > > more. Mainly I would like to hear from others in a similar situation
> > > and hear how your lives have changed and much more. I worry so much
> > > about my daughter( whom we named Hunter) and want to be sure that I
> > > do everything in my ability to let her live a happy and healthy life.
> > >
> > >
> > >
> > >
> > >
> > > 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/
> >
> >
>
>
> [This message contained attachments]
>
>
>
> ________________________________________________________________________
> ________________________________________________________________________
>
> Message: 5
> Date: Sat, 24 Mar 2001 20:35:50 EST
> From: JHmphr3@...
> Subject: Re: Digest Number 66
>
> I can not imagine the pain of losing a child. My heart goes out to you. I
was
> shown the injections at the hospital and also was told to triple her
> prednisolone any time there is a fever, diarrhea, and other illnesses. I
> wonder if she has weird doses as it seems most people say they double
thiers.
> I guess like you said you can't over dose. I am so scared of Hunter
getting
> sick. Her sister is sick now and I don't want her near her. I know I can't
> keep her in a glass jar all her life but I am so afraid that something bad
> will happen to her.Like what if she were to get a fever in the middle of
the
> night and not get fussy and wake me up? I had my first scare today. We
were
> just released from the hospital Thursday and Hunter had had a scope done
on
> her uretha that day. Today she had a bowel movement and when I changed her
> diaper there was some blood that came out of her uretha. I immediatly
called
> the doctors who assured me that if she was fine, not fussing, eating well,
> and not feverish that she was fine and it was a common thing to occur
after a
> scope. But it still scared me. I think it will take a long time before I
can
> relax. I think I would feel better if she could talk and tell me if
something
> was wrong. Well she is hungry again!! She has almost doubled the amount
she
> was eating in the hospital already. Well thank you again for your response
> and hope to hear from you soon.
> Jenny H
>
>
> [This message contained attachments]
>
>
>
> ________________________________________________________________________
> ________________________________________________________________________
>
>
>
> Your use of Yahoo! Groups is subject to http://docs.yahoo.com/info/terms/
>
>