My daughter will be 11 next month and has been diagnosed with late onset CAH two years ago now.  She has been on Cortef and is under control.  Instead of her bone age being 2.5 older than she is, it's down to 1 year now and her labs have been all coming back in the normal range.  I have a question, and this may be really STUPID, but I am still ignorent on things that deal with CAH that I have never been exposed to. 

Yesterday she was complaining of burning while urinating and it even hurt for quite a while after she was done and she said it was itchy.  Well, I looked at her to see if she cut herself because she was scratching herself and very surprised at what I saw.  Is it possible to get ambiguous gentilia (sp) at this age?  Her cliortis is so large you can see it when she is standing up.   I also have a 9 year old daughter and compared the two and they are like night and day.  My nine year old has some enzymes that are not in the normal range but not enough to warrant medication, according to the doc.  She does seem fine.  She has a little bit of fusion, and they had me put Premarin on her and it helped. 

I am taking her to her PCP today, but if anyone could give me any info.  I thought it happened at birth only, but .... I don't know.

 

Thanks,

Michele