re: re: I need info ... 5 month old with CAH
Aug. 4th, 2002   10:55pm

I have two boys with CAH (salt wasting) ages 4 and 8 years old  (and sadly - my daughter died from adrenal crisis at age 2 and fever).  Now we have a one year son - without CAH. It takes both parents to carry the gene for CAH to have a CAH child. A carrier is a person that does not have CAH but just the gene for it. 

So yes - fever, vomiting, and diahrea (of course - serious injury - say a car accident) will be serious for you and your child and you will need to have solu-cortef injection kits.  Don’t let the doctor tell you that you don’t need it... that you can get the hospital in time. Not true - what if? What if you wait in the emergency too long? Have a medical alert band of some kind.

Go to the CARES web site and click on adrenal crisis - and download the instructions for how to give the solu-cortef and the emergency letter. Also they have local networking with other parents of CAH kids.  Please join - it is a non-profit organization.

www.caresfoundation.org

1-866-227-3737

feel free to email me - rbertpreston@aol.com or roberta.preston@pentagon.af.mil

I can mail you the instructions if you can’t print them.

 

roberta
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