1. Have you told your child about their condition?

Yes, I told him the day after we got the diagnosis. My son was 6 1/2 yo at the time, so could already understand quite a lot.  We were at the hospital for four hours running tests, and he was in the room when the doctor gave us the news.  I’m sure it was obvious we were very serious and grave, so I felt he needed an explanation right away.  Otherwise---like Brenda and Megan have said---I was sure he would think he was dying and I certainly didn’t want that. 

2. If so, how did you tell them?

I used an illustrated home medical encyclopedia to show him where the brain and adrenal glands were, etc.  I thought it would be easier to grasp the idea if he could "picture" it. 

3. Did you go into many details? If so, explain.

Yes.  My son is not a salt-waster, and had always been very athletic and healthy looking. In his case, I don’t think it would have been very understandable if I had just explained CAH in terms of getting ill.  He was not a sickly child and had always been perfectly healthy with NO medication, so I’m sure he would have been left thinking, "Why fix something if it wasn’t broke?" if I had just left it at that.

What he DID have were issues with precocious puberty.  And he was also very, very tall.  So, I felt I needed to explain not just about lack of cortisol, with CAH, but also about the effects of excess androgens, since that was much more apropos of his situation. 

So, yes, I did go into a bit of detail, including explaining to him about bone age.  But, it wasn’t so much "detail," as making him understand the basic concepts.  In other words, low cortisol = high androgens.  High androgens = advanced bone age and premature puberty.  Taking medication = lower androgens, fewer symptoms.

I also tried to use analogies that I thought would make the whole thing more understandable.  E.g. I think it is very difficult for a child (or even an adult) to picture exactly what a "hormone" is.  But, if you think of a hormone as a signal or message from the brain, I think it’s easier to figure things out. 

Essentially, I told him that, because of CAH, his body was getting the wrong signals from his brain.  And these faulty signals were screwing up the timing of his growth.....that was why he was so much taller and more developed than everyone else.  I told him that, among other things, the medication would help to correct this timing problem and help him grow more on pace with other kids his age. 

4. Are you an adult with CAH? How were you told of what you had? Was it positive? Negative? Please explain.

5. What advice can you give me as the best approach to address the many questions of: Why do I have hair(down there), why do I need to take meds, why do I need tests?

In general, I am a firm believer that the more the child understands, the easier it is to get them to agree to take meds, go for testing, etc.  When something is only HALF explained, I think you usually end up with even more questions than you start out with.  I think this is true also with doctors and parents....if you only get HALF an explanation, you usually become TWICE as confused (or at least I do!) 

So, to me, there is nothing like telling them the truth about why they have hair down there, why they need to take meds, or why they need tests.  It’s so much easier than trying to come up with something that sounds even halfway logical or believable.  But, like Danny, I also think it is very important to convey the information in a matter of fact, non alarmist way.  

At this point, it’s been almost four years since my son has been treated.  Getting him to understand why he needs frequent testing is not usually a problem, because he has experienced both undersuppression AND oversuppression, and understands the side-effects of each.  He realizes that he feels the best physically when his medication is correctly adjusted. This is usually enough to make him be cooperative about testing. 

6. Do you think it is the best approach to tell your child in a formal way or an informal way? (i.e. just sort of mention it as they are playing, or sit them down and talk about it).

The very first time, I did it "formally".....sat him (and his sister) down for the explanation of why we were at the hospital for so long, what this was all about, what it would mean long term, etc. After that, we discussed it more informally.  Sometimes, riding in the car, running errands, etc.....whenever the topic would come up.

I have also told him that he can ask me any question he wants about CAH, and I will always try to give him an honest answer.  Sometimes he has more questions than at other times.  But over the course of almost four years, we’ve covered just about all the different topics...testing, different medications, side-effects, etc. 

7. If you haven’t yet told your child, how do you plan to tell them?

8. For those of you who have told your child, what do you regret most about your approach and how would you change it or would you do it the same way?

I think this approach has generally worked very well for us.  I feel that my son has a fairly good grasp of what is going on and he seems to feel comfortable in his own skin, which is what is most important.  

Thanks everyone for your input!! I really appreciate it... it will be a God send!

I think a lot of how you approach things will have to do with your own values and the personality of your child.  And, of course, the age of your child. This is just what has seemed to work for us....good luck!