re: New to the CAH world
Jun. 6th, 2002   12:28pm

Hi Gina,

I am sorry that your daughter has CAH. The CAH world is not as small as you might think. Hopefully, you will get much information from other parents who have been there, done that. I have an almost one year old SVCAH son. That is still Classical but non saltwasting. He was diagnosed through newborn screening. I am assuming that your daughter has the nonclassical. You can correct me if I am wrong.

My son is still very young to figure out how he does in sports and the heat being that he is not a saltwaster but he has been out with me and my other two kids at the pool all day in 90 degree weather for the last couple of days. Of course he is not swimming laps but he does play in the pool with me and his older brothers. I keep him well hydrated and he seems to be just fine. He has been sick twice with ear infections and fever and always came out of it ok with double meds. He never looked like he was going into a crisis at any time.

My son was also cushingoid at about 4 to5 months old. I didn’t even realize it because I thought his chipmunk "moon" face was because he was chubby. He never had a hump though. His cortef dose was cut in half and since he has been doing wonderful.  I was wondering, like Carole, how they diagnosed your daughter and how they "tested" for Cushingoid?  The moon face and hump on the back of the neck, if after starting meds, is caused my too much meds. Let us know. If it was before the meds, then it is puzzling.

There are many parents on this board with kids your daughter’s age. Hopefully they will be able to help you out more.

Take Care,

Sandra

 

 

Sandra
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