Congenital Adrenal Hyperplasia

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re: My son's prognosis
Feb. 7th, 2010   9:16pm

To Kandice,

                   Please whatever you choose to do, trust your own motherly instinct.  Don't let a doctor sway you into something you don't think is right for your son.  I speak from experience.  When my son was born 2 years ago, I told the healthcare team (nurses, and MDs) that something was not right with my son.  He was very lethargic and not acting like a "normal" newborn (I also happen to have a Master's Degree in Nursing so I do know a thing or two about normal vs. abnormal).  The health care team assured me that everything was okay with my son and proceded to tell my family that I was the one who was ill and suffering from postpartum depression.  They prescribed me Zoloft and sent my son home with me.  48 hours later, the pediatrician called me in a panic as my son's lab results had come back with critical newborn screen results.  Since we live in a remote town of VA, it took us 1.5 hrs to drive (entirely too fast during a snow storm) back to the nearest Level 1 Hospital to be told that our son would most likely not make it through the night.  Thank God, he was a fighter and pulled through. 

        My point here is don't blow off CAH as a minor disorder, but also trust your own motherly instincts and do what you think is best for your son.  Until he is an adult, you are his advocate and you know what is best for him, not the healthcare team.

Good luck and please keep us posted!

Sean’s Mommy

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