PKU.com Community Discussion Forum What’s the Phe? Mom needs suport and answers Reply To: Mom needs suport and answers

#6012
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timcogdill
Member

Though I am sure you have resolved this by now – I just want to add that if your baby had / has CPKU it is very important to get on diet immediately!! No need to panic might be okay to say – but you certainly MUST have a sense of urgency on this.
CPKU is what my son was diagnosed at 8 days old and his levels were aleady at 22 when we arrived at Shands Hospital in Florida on his 9th day.
The doctors told me to leave my conference in New Orleans and to be at their clinic the next day!
I am confused at how your baby was diagnosed at 8 weeks – but again – it may not have been CPKU – and that is the reason – but leave nothing to chance.
Your pediatrician is usually the one to call you once notified by the State Lab where the newborn screening is done?
Hope all is going well with your little one!
TC – Father of “West” w/ CPKU (3 years old)

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