Community Discussion Forum New to New to PKU Reply To: New to PKU

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I’m totally freaked out nFound out today that my 10 day old neice – Alyna has PKU, diagnosed on her newborn screening. Reading some other messages it sounds like there is further confirmation testing to be done – what is that about?
Right now my sister has had to switch from breast feeding to a formula from the hospital – but she may be able to breast feed again later if levels come down. nDoes this sound likely??
I’ve also read about ‘transient PKU’ nWhat is that – it sounds like something you only have for a while but everything else I read refers to it being lifetime.
Any and all support appreciated

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