survey of parents of CAH patients
10/26/00 10:42 AM
The Virginia Department of Health has been directed by our General Assembly to study the feasibility of adding CAH to the tests performed on newborns. This is not currently performed in Virginia. Because of your past experience with CAH, you are in a unique position to tell whether newborn screening would have benefited your child if it had been available when your child was born. We would appreciate your answers to the following questions. This information is kept confidential. Thank you. 1) Sex of child 2) Age of child when diagnosis was made 3) What made your doctor first suspect that your child had CAH? - Abnormal-appearing genitals - Severe dehydration (Salt-losing crisis) - Precocious puberty - A previous child had the same diagnosis 4) Assuming you had learned of your child's diagnosis by newborn screening at the age of 10 days, would it have made a difference in the care of your child or your ability to deal with this difficult diagnosis? 5) Other thoughts and comments
Dawn Wyvill
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