My son (with SWCAH) will be 8 in about a month. 

 When he is invited over to another childs house I take the time to explain CAH to the parents before he goes over. I don’t worry about if I am going to scare them or not. I don’t hold back any information as long as it is important to a boy with CAH ( no need to explain the sometimes ambiguous genitalia in girls when I don’t have a girl)  I make sure they see the needle he has to have in case of an emergency.  I explain how to pop the top of the solu-cortef and how to insert the needle and how much to draw up etc...  I make sure they know he could die from adrenal crisis.  I tell them what the emergency situations are ( broken bones, massive blood loss, high fever etc )  I tell it all.  This is his life. This is how it is. I let the parents know that odds are they won’t need to use the shot but it must be with him.  They have a right to say no thanks. If they can’t handle that then he shouldn’t go to their house without me.  It’s OK for them to say no thanks. Some people get scared. It is a lot of responsability. We can have the friend to our house instead.  So far, the parents have welcomed the information and gladly taken the shot kit.  He has been on many playdates. He has been to the movies with a couple of friends and has even spent the night.  They always have my home phone and cell phone numbers.  

  Birthday parties -- if I don’t know the parents and/or  they don’t know about the shot kit -- I stay at the party. But even if he didn’t have CAH I would stay at the party if I didn’t know them.  We will adapt as he gets older... much older.   

 When my son moves out of the house as an adult then my duty of informing others is over.  (smile)

 

 

Susan