Community Discussion Forum Parent support Late diagnosis Reply To: Late diagnosis

Avatar of Breanna

I just wanted to say, I’m sure that your children sound like their doing great. As long as their levels are where they need to be then them not walking yet is probably just because that is how they’re normally developing. When I was 2 days old my mom said the doctors had her bring me into get the new born screening test done again. She said they told her they lost the test, but to this day she is pretty sure they wanted to just redo the test to confirm the PKU and they told her they lost the test so they wouldn’t scare her. I was finally diagnosised at 4 days old and my little sister was diagnosised at 6 days which are both about around the usual time kids are diagnosised with PKU.
Michelle’s little one was an acception where PKU wasn’t diagonsised shortly after birth but her baby girl will still be fine. And I’m sure with the correct diet and levels she will grow up to be a smart kid.

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