Hi Louise,

Well, I can tell you that after a few weeks, maybe months, you will feel much more in control of what is going on. I have 4 boys. My youngest two have SVCAH (2 1/2 yrs and 1 month). Simple Virilizing (SV) means non salt wasting but still in the classical CAH range. In case you don’t know yet... SW (Salt wasting) and SV CAH are both classical and late onset is considered Non Classical (less severe).  My first CAH son was diagnosed through newborn screening. My second CAH son was diagnosed prenatally. My first time around with CAH was like a nightmare. My son started his meds when he was 30 days old. He wasn’t a salt waster so I didn’t have the crisis to deal with but I was still in shock because he was so healthy and then two weeks after I brought him home I get a call that something was wrong because he didn’t pass his newborn screen. I was scared, upset  and in complete disbelief. Since I had never seen him sick and he has never been sick from his CAH I couldn’t accept that he had it. I finally had genetic testing done which really helped me accept the diagnosis. I even took him at 3 months to see Dr. New in NY because the doctors here were telling me my son was a SW and I just didn’t believe it. We spent two weeks with Dr. New and when we left she had re diagnosed him as a SV. Now...I was stuck on his "label" for a long time. You will learn though that CAH is such a wide spectrum. You can have a SW child present more like a Non classic or a SV present more like a SW. The most important thing is to see how your son does as he gets older. This will give you an idea of how severe or mild his CAH is.

In your son’s case, he is still so small and as he gets older the salt wasting part will hopefully improve.  Babies usually need some time for their kidneys to mature and help better retain their sodium. This is why your son’s florinef dose may go down as he get a little older. Since he is being monitored so closely you can feel a little more comfortable that they will keep him in check.

With my youngest son, who will be a month old tomorrow, I can tell you that I have done a complete turnaround from my first. I am much more comfortable and I am enjoying him so much more than I was able to with my last son. 

It is scary to think that your child has CAH but CAH is very treatable. At least you now have him on medication and being monitored by a doctor.  As time goes by you will see how your son does and you will adjust accordingly. He will be able to have as much of a "normal" life as any other kid. I can’t tell my two CAH boys apart from their two older brothers. Heck...I can’t see much of a difference between by 2 CAH boys and all the other little kids. The only difference is they take meds. As I talk to more parents though I find out that some have kids that are taking meds for other reasons, asthma, ADD, stomach problem, allergies etc. 

I hope he continues to improve and if you ever need to chat, please feel free to email me.