re: re: 2nd child just diagnosed w/CAH
Aug. 16th, 2004   11:12pm

Hi Stacy,

I haven’t posted in quite some time.  Life is just back to normal and very busy with 4 boys.   My youngest two have CAH.  My oldest two were born in CA (same hubby) and my youngest two in TX.  My oldest with CAH is now 3 and the baby is 8months.   I was devastated when my first CAH’er was born.   I couldn’t believe that I had caused this and that he would have to be on meds for life. It took me a while (long while :) ) to get myself together.   Thankfully, I have a wonderful husband who put up with me and let me sit on my computer for days...on this board...reading and learning.  Thankfully, I found some wonderful parents, on this board, that really helped me.   Finally, I was ready to have another baby.  I felt that I missed so much of the first few months of my son’s life because I was so consumed with CAH. 

I started taking the dex as soon as I found out I was pregnant.   I had a CVS done at 10 weeks. We did a FISH test so I found out the next day it was a boy. I stopped the dex cold turkey ....bad idea.  Three weeks later I found out that the baby also had CAH.  One parent described being told that the diagnosis felt like a punch to your stomach. I felt the same thing. I literally felt sick to my stomach. I cried and cried.  I called my husband at work and he said, "OK...at least we know what we are doing. Really, it’s not that big of a deal". I couldn’t believe how casual he was about it. In the long run I think it helped me because in a week or so, as time went on, I felt better about it. 

Now, I have 4 busy body boys who are the light of my life.  You would never guess that my younger two had anything.  Fortunately, we haven’t ever had to deal with a crisis.  The baby was born without any problems and get this....he passed his CAH newborn screen! Scary!! I kept trying to tell the state screening nurse that he did have it and she kept telling me that he passed way under the cut off.   Either way, he is great.  He has more teeth and has hit all his baby milestones way before any of the other babies, on our block,  that were born around the same time!! I like to think that he super smart :)

My 3 year old goes to a mothers day out and loves it. Life is pretty much good. I still freak out when they get fevers. I still take the baby to the doctor at the first sign of fever to make sure it’s not an ear infection or something like that.  I do worry about them possibly not taking their meds when they are older.  Most importantly though I don’t treat the younger two any different than I did with the older two.  I think that God works in mysterious ways. Even though I didn’t want two with CAH, I think it is a blessing in disguise.  My younger two have each other to talk to about their issues as they grow up.

As for now, I book their endo appointments together. I take them for blood work together.  Other than that, CAH is just that... a few extra doc visits and some blood.

Well, I didn’t mean to write a book. I just wanted you to know that no matter how upset you were at first, that was  normal reaction. In time, you’ll see that it’s a blessing in disguise and really not much more of a big deal than having one with CAH. Even that after time seems to be less of a big deal.  Oh, boys with CAH don’t require surgery.   There may be some exceptions but they also have separate issues not related to CAH that may require surgery. 

Good luck with your pregnancy.

Sandra

Sandra
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