Hi Bill:

Welcome to this web site.  It is a wonderful tool and a good place to come when you have concerns/issues, etc.

I have a 4 year old son with SWCAH.  He was not diagnosed until 3, which is unusual.  He was actually very tiny at birth and through the first 3 years.  He was considered failure to thrive and wasn’t even near the growth charts.  A few months before his 3rd birthday, he started growing in leaps and bounds and we were thrilled (figuring he was finally catching up) until he started getting pubic hair.  He is now over the charts for weight and height and has an advanced bone age of 8 (4 years more than it should).  The doctors feel that he has lost a lot of height potential, which has me worried because my husband and I aren’t too tall so he was already challenged.  :)  The good news is that there are growth hormones he can take when the time is right to try and gain some more inches.  Also, there is tons of research being done so anything can happen by the time he reaches his teens.

Personally, I feel it is good for you that your son was diagnosed earlier and started the meds early.  I firmly believe that my son has learning disabilities because he was undiagnosed for so long.  I agree with most people on this board and allow him to lead as normal a life as possible.  He tends to run hot when he is playing (i.e. very sweaty and red faced) but we double dose him when needed and give him plenty of water/gatorade.  His medicine is no big deal for him.  He has been taking the tablets whole since he was 3 and is a pro at it.  He takes his Cortef/Florinef together in the morning with a small sip of water, which amazes his father (who has to drink an 8 oz glass of OJ just to take an aspirin).  He also has already learned to accept his quarterly blood draws and sits quietly as they draw his blood.  We are so proud of him.

Unfortunately, we have had to take him to the ER a few times for some adrenal crashes but they take good care of him and he always seems to bounce back within a few days.  It is challenging trying to describe the importance of the medicine to day care providers/schools, etc.  Most of the time they want to shy away from the responsibility.  I ususally provide them with as much background information as possible and always make sure that they have my most current emergency information.

Hang in there - you are doing the right things and you will come to learn when your son is having good and bad days.  Mood swings can be bad some time but extra loving and attention usually does the trick for my son.  Remember we are all here for you if you need answers or a shoulder to lean on.

Take care,

Kristin