Congenital Adrenal Hyperplasia

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My daughter. I'm very worried.
Sep. 1st, 2003   2:36pm

I'm really worried about my daughter.  I have late onset CAH,  I'm not a salt waster.  I don't believe my husband is a carrier.

My daughter is very tall for her age and very muscular.  But, she was on the 97th percentile when she was born, and she still is on the 97th percentile.  So could it be possible CAH, or is she just tall.   (my bone growth stopped when I was 13 as I wasn't diagnosed until I was 21, so I am shorter than I should be.  Thanks CAH!!!)

She's muscular, but she doesn't stop moving.  She jumps and runs and somersaults all day.  She swims well, and she's fantastic at ballet and trampolining.  So is she muscular from CAH?  or is she just very athletic?

She is also Never Ill.

Do you think I should be worried?  I have the prescription for bloods in my handbag but I'm so scared to take her to be retested.  (She was tested at birth through Great Ormand Street.  The local maternity hospital wouldn't let me go home until they got the results.)  They were negative, but I'm still worried.

I'm scared to get the tests done because I don't know if I would give her any treatments after my treatments left me in a worse condition than my natural state.  (I hate dexamethasone, and I am really upset with the endocrine specialist who told me that there would definately be no side effects because it was only a 'physiological' dose.  He lied, and I've got the weight and terrible marks all over my skin to prove it)

She's also so healthy, I wouldn't want to interefere with her system.  She never has time off school for ill health, so why put steroids into the equation?  Also, if she ends up only five foot.  Well, that's not so bad is it.  I'm only five foot and it's never bothered me.  I have been sucessful in everything I've wanted to do. 

Sorry to rant, I'm just so confused and scared, and I dont' know what to do for the best. 

Gisela




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