I am the father of a son, who will be 17 in two weeks. He has CAH and
is a salt-waster. I well remember putting my son into the NICU in a New
Orleans hospital when he was only 2 weeks old. Thank God he was
properly diagnosed, treated and to all appearances is today quite normal
and healthy. Of course, he takes his daily meds, but he has pleasantly
surprised his pediatric endo and us all by growing to a height of 5'
10", and he may not be done yet. (His older brother who does not have
CAH is 6'4".)

Like you, and all parents of CAH children, we were distraught at his
condition, particularly in his infancy. All babies are miracles, but
this one is a special miracle to us. And yes, I agree with Roberta, make
sure you keep at least one or more vials of the injectable solu-cortef
on hand. My wife and I did try to inject our son once, when he as 3 or
4 years old. I was so nervous, and hating needles myself, I botched it,
I think by striking the needle against his thigh-bone, then retracting
the needle and re-injecting (we only had one vial). The solu-cortef
worked, but my son suffered a staph infection in his thigh which
ultimately required surgery to remove an infected mass, leaving a scar
on his thigh. If you have no experience in giving injections, I recall
they recommended practicing with an orange. Obviously, I did not have
enough practice, or confidence.

Long and short: keep the medication with you and your child, and keep
your cool should she suffer a 100 or 100+ temp, or become severely
dehydrated. And if you are not a praying person, you will be.

17 years ago, CAH was not as well known or properly diagnosed as today,
but from my son's experience I would say that if you are watchful and
can obtain informed medical treatment (I did some quick studying
myself), your child's health should be manageable and she should live a
near normal life.

Jeff



preston wrote:
>
> http://congenitaladrenalhyperplasia.org/mb/page1.htm
>
> Jenny - Here is another web site for CAH - this one is a message board for
> parents for CAH children. Danny Carlton in Tulsa, Oklahoma put it together.
> Originial Debbie Watson owned it. The other web sites below link to it too.
> But the ones below are for on-set CAH (CAH developed later in life). My
> children were born with CAH. I have a two year old and six year old (sadly
> the middle child - Jessica died at age 2 and 1/2 years from an adrenal
> crisis). Most important thing about CAH - always have the solu-cortef
> injection kit with you. And do not ever (ever) wait to give increased stress
> dose and go to the hospital. That is how Jessica died the stupid doctor on
> call insisted by we just double the cortef. She was on the liquid cortef and
> at the time the medicine was not mixed right or made right from the
> manufacture and it was not enough. She should of had the injection and got
> to the hospital. If I could only go back in time. But I can warn others!!! A
> fever is an emergency with CAH. Do not in any circumstances listen to anyone
> else - go to the hospital and give the solu-cortef. Know how to give the
> injection. Always have 3 or 4 bottles of it on hand. Print out this pamplet
> from the National Institute of Health.
> http://www.cc.nih.gov/ccc/patient_education/pepubs/mngadrins.pdf
>
> Carry this pamplet with you at all times!! Put it in the medicine bag with
> the solu-cortef. Make up a travel kit with a therometer, tylenol, and cortef
> (solu-cortef, 3cc syringes, , 23 gauge 1 inch needles.
>
> Roberta
>