CARES web site and phone # is:

Kelly R. Leight, Executive Director
CARES Foundation, Inc.
(Congenital Adrenal hyperplasia Research, Education and Support)
973-912-3895
866-227-3737 (toll free)
email: kelly@caresfoundation.org
URL: www.caresfoundation.org

Under links you can order booklets from Pediatric Endocrinology Nursing Society (PENS) about CAH. These booklets are wonderful. What type of CAH does she have? No other what kind - kidney problems are not an issue.  You need to be more concerned with the right hormonal levesl and blood chemistry levels.  If the cortef is too low - the blood pressure can be too low and she can die from an adrenal crisis. This can be too low during an illness. You must double or triple the cortef for a low fever or illness. If she is vomiting (repeatly) or diahrea - you need IV and solu-cortef. And solu-cortef for a high fever or severe illness or infection.  I have two boys with CAH (salt wasting) and I have never read that there are kidney issues.  She should have a normal life. And CAH children are very smart and very normal intelligence  - President Kennedy had an adrenal insufficiency - Addisons - (unless you let her go into a coma - because you did not increase the cortef for illness - but this usually ends with death from the coma).  As you know already - be very careful with illness because she does not have the stress hormones for an illness and it is better to safe than sorry.  You can not over dose on cortef during an illness and you must increase it. Apparently the doctors have already told you this... and to always have the solu-cortef on hand. http://www.cc.nih.gov/ccc/patient_education/pepubs/mngadrins.pdf

There can be some psychological issues with sexual identification if the surgery is not done correctly or whatever with the severe salt wasting girls. It is important to find the best doctor for this type of surgery or it can lead to problems (physcial and emotional problems). There are only are few doctors that have done this type of operation (many would like to try it out but I wouldn't want to be on the other end of them just trying out their skills).

The National Institute of Health in Washington DC has a wonderful pediatric endocrinologist - Dr. Deborah Merke. phone - 301-496-0718. The nurse is Meg Keil .  They have patients from all over the United States (and some from Canada).  Here is a web site about CAH and the clinic - http://www.cc.nih.gov/ccc/patient_education/pepubs/cah.pdf

Anyway - you need a good regular pediatric doctor and a good pediatric endocrinology.  And perhaps a good surgeon if she has salt wasting CAH form.

Let me know if you have any questions.  My email is preston@kreative.net  I also have a new baby boy - Anthony and he does not have CAH.  Anthony was born 2 August 2001.  He is crawling and standing up - and doing fine... 4 teeth. Some babies are just fat in the face - with or without CAH. Be alarmed if the she is sleeping too much (always - give more cortef immediately for a fever or illness - do not be afraid to take her to the ER or call an ambulance). Wake her to give the medications. Give them on schedule. If she is ill - the cortef is short lasting and need to be given every 6 hours. Say you gave the cortef at 7 am... and she is ill at 10 - give the extra cortef at 10 and do not wait until the next dose at 3pm or 11 pm.  This is important!!! Worry more about not enough cortef that too little.