Hi Jenn,

Congratulations on your new little guy. I have 4 boys (9yrs, 6yrs, 3 yrs, and 13 weeks) so I’m partial to boys. My youngest two have SVCAH. That is still classical but not "supposed" to be salt wasting.  The baby seems to be a little bit of a saltwaster and my other son is less of one than the baby.  There are two types of CAH. Classical and Non Classical (NC) also known as Late Onset CAH. Within the Classical CAH there are two types, saltwasting(SW) and simplevirilizing(SV) . I’m assuming that since your son is not on florinef that he is either Classic SV or NC

My now , almost, 3 yr old did not start his meds until he was 1month old. He was detected through newborn screen.  Is that how your son was detected?  I remember when I got the call from the doctor that something was not right with his newborn screen. He told me it was Congenital Adrenal Hyperplasia. I told him he was nuts. My baby didn’t have any problems, he ate fine, slept fine, looked good. It turned out that he did have CAH and it was the beginning of a whole new world. Not necessarily bad but different to what I was expecting to ever deal with. Now, very thankful that it is CAH and not something worse.

As far as not being symptomatic...well there is a chance that you may never see symptoms unless he gets very ill or is in some kind of accident that would require stress dosing. If he is non classic, it is unlikely that he will have a crisis. I say unlikely because it could happen. The only other symptoms you might see are from the medications. Either too much or too little can cause growth problems and many other things that we are trying to prevent the CAH from doing. Of course if he were not treated, the CAH would cause those problems too. The key is to try to always be at the right amount to minimize any other problems.

I use Cortef pills for both of my boys. I tried using a syringe for dosing the cortef and I hated it. Not only did some get stuck at the tip, I needed more water and that made the bad taste go on longer. My dad suggested to me an idea that I have been using ever since. Actually, I stopped using it for my 2 1/2 yr old since he started chewing it up on his own at about 8 months. I started using it again with my newborn and it works like a charm. I take a little gerber coated spoon and put a drop of water on it. I drop the pill into the drop of water and wait a little until it gets soft. I hold my son in a cradle hold and stick the spoon in his mouth. The little pill with a drop of water spills into his mouth and I wipe the soft spoon against his upper jaw or lip and it comes out clean. I don’t have any mess to clean up. I rinse the spoon and it’s ready for next time. It’s easy. My husband dose the evening doses and it’s easy to do. My little one is asleep and we gently push down on his chin to open his mouth a little bit and slip the spoon in. He hasn’t woken up yet.

If you have any questions, feel free to ask.  This is a great place for support.

Sandra