Community Discussion Forum Parent support Low Levels in CPKU Preemies HELP PLEASE Reply To: Low Levels in CPKU Preemies HELP PLEASE

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I’m sorry, if anyone knows, I do. It’s very frustrated and emotionally draining! We did the genetic testing and it came back with one mutation seen in classic PKU and one seen in mild PKU. Good luck with the results, hopefully it comes back with mild PKU, it’s better than CPKU. That’s really all we can hope for is the mildest possible case, because we know that they have it, so there’s no changing that. Let me know how it comes out! It’s nice to know that other people are going through the same thing, that someone else can relate. Makes you feel a little less alone out here. Where are you from if you don’t mind me asking?

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