My neighbor’s child developed selective mutism when she was very little (2yrs) and would only talk with her parents, family members and my children.  Once in a while she would talk to me, but not often.

I remember she would be over my house playing with the kids I would be in the other room.  I would hear her squealing with joy louder than any of the other kids.  When someone she didn’t know well came around she would clam up again.

I am happy to say that in her second year of pre-school (4 yrs) she began to select more and more children she would talk to and now (7 yrs) I actually have to ask her to quiet down a little bit some times.  She is one of the happiest children I have seen.  It doesn’t hurt that she has flaming red hair, blue eyes, dimples a mile wide and she is always smiling and laughing!(;>)

I happen to know, for my child, that under suppression can cause hormones to fly and mood swings at the drop of a dime.  It can also trigger the body to begin going into puberty.  For my son it was at 4 years of age.  Once they "stomped" on his androgens with huge doses of steroids he became sluggish, whinny and cushinoid.

Now that he is on the growth hormone program and growing at a steady pace it does seem to be easier to keep him under good control.  Don’t get me wrong, he still has his moments, but so do "normal" children.  I just have come to realize that when he has something very stressful (in his eyes) happen to him he gets a boost of hormones and it takes him a while to calm down from it.  He feels sick to his stomach and gets very emotional.  Don’t get me wrong, the things that upset him are not that much different from his (carrier) sister but are much more emotionally packed.

To blab on even more, I have been monitoring and contributing this board for many years now and one of the things that sticks out to me is that it does seem like the children whose CAH seems to be more severe, whether it be because of the Salt Wasting aspect or the type of CAH they have, seem to get very ill when they do get ill and very emotional when they do get emotional.  This is not to say they get ill or emotional more often than anyone else, just when they do it seems worse.

The best way I can explain it is that imagine that you are driving down the street and a deer jumps out in front of your car.  The testosterone and adrenaline free flow until the danger is gone and then your body quickly gets back to normal.  The adrenaline rush leaves you feeling more awake and a little more energetic. 

The CAHer however, is still left up in the panic (fight/flight) mode and only time will allow his hormone levels to get back to a more "normal" level and they are left feeling a bit sick and ill at ease.  My son actually threw up after a drunk man at a soft ball game approached him and began using fowl language and threatening behavior.  I had to sit with him and "talk him down" until he could get back to "normal".  He was humiliated and very anxious and depressed the rest of the evening.

Again, this is my take on the way SWCAH effects my son’s life.  Once we figured out the best way to help him get past all the emotional stuff he felt empowered because he understood why things were happening to him.  It gave him something else to focus on while his hormones were trying to straighten out.

When he gets sick with a bug or virus, well, there isn’t any amount of talking that can help him get through that.  We usually have to give him the shot and run to the ER.

Despite all of these things in his life he still plays basketball, loves school, acting, playing with his friends, swimming, girls, reading about all different things, camping, vacationing and all the other things that other kids enjoy.  We have just learned to incorporate it into our lives subtly but always being ready for an emergency.

I hope this helps others whose children have severe SWCAH symptoms and feel a bit alone because other CAHers don’t seem to get effected so severely.