Hi Beth,

I'm really worried for you here. You must be frantic with worry.  It's really difficult and especially when your children no longer live at home or they are independant and taking charge of themselves. Quite honestly that is one of my worst nightmares, except my son has salt wasting classical CAH and I think he'd get sick pretty fast.  Your son's sounds like he has the other type CAH.  By your description, he sounds like he is already becoming sick, and I knew that non- compliance did exist, but you are the first lady I have heard from.  I think the difficulty also, even though you could try counselling is the fact that it is very hard to find a specialist counsellor, who understands the in depth nature of CAH, and even then, it's getting your son to admit that there is a problem if he is rebelling against the meds like Wendy Lee says.  That is a good reason for finding one now and educating them about Kevin, so that these episodes are easier to deal with.  I can understand he get's angry when you remind him too, that is a typical teenager for you, especially I feel when he doesn't get ill immediately like a salt waster would.  With your son's CAH as you point out it is more of a  gradual decline and that in itself can affect the way that he feels too.  You can understand him thinking, 'Hey I don't get sick when I stop these med's." Have you ever been in touch with other parents who had boys around the same age as your son?  I would say he does need to talk to someone in the same boat, and preferably someone who has been there and done that.  I say this because then  perhaps it would help him to realise that someone else has already been through the same stuff and didn't take their meds.  In getting through all this it may be a good idea to try and set up counselling for future repeat episodes for when you do hopefully get him back on the right track.  It always seems that these are not available when you are desperate and really need the support and especially with CAH.  Is there  anyone  at all within your family or close family circle or friends whom he really respects and will listen to?  Someone who has a good knowledge of his condition and may be able to help him see some sense.  It's just that sometimes older kid's do perceive us as nagging somewhat when all we're trying to do is look out for them, and if there is somebody who can do this, it may just help him.  This goes for much things at that age besides medicating for CAH.  There must be someone whom he really admires a great deal and will listen to besides yourselves.  He may also need to have an appointment with his endo to explain in depth what is going on in his body and that he really DOES need the meds and that there is no other way around it.  If he has had this in the past, it may not have sunk in and then there is the doubt also.  The doubt that they got the diagnosis wrong. Also, maybe the endo could talk to him about the importance of taking the meds on time and what happens when he doesn't.  Even adults diagnosed with LOCAH sometimes have a problem with the diagnosis and go through these phases of testing themselves to see if they really do need the medication.  I've seen it on the LOCAH boards but eventually, after one or two episodes of this, they seem to settle with the idea and come to terms with it.  Hopefully, before he get's too sick, he will realise what is happening and it will help him to come to terms with the CAH as a diagnosis and accept it.  Not that you need him getting real sick before he discovers this for himself.  That is why I say to you to find someone he really resepcts and will listen to.

I hope that this helps some.

J