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Old 02-11-2013, 07:08 PM   #42
Join Date: Dec 2006
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Re: anyone decline the PKU?

Originally Posted by JennTheMomma View Post
I have had friends decline because they get tested for the gene themselves instead of testing baby. PKU is rare
So what if it's rare? does that help the family of a dead baby whose death could have been prevented?

Originally Posted by ktmelody View Post
But the pku test involves over 30 endocrine, metobolic, hemoglobin and cystic fibrosis screenings. Not all are genetic.

It isnt just testing for pku any more (there may be states that dont include all the screenings but all states test for more than pku)
Not all states test for that much, it's worth checking into what your state tests for and asking for expanded testing if not and knowing what is NOT normal for a newborn is useful.

Rare also means not many docs know about the disorders, so if a baby shows signs often a doctor will miss it
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