Community Discussion Forum What’s the Phe? Late Diagnosed PKU on my baby cousin Reply To: Late Diagnosed PKU on my baby cousin

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In all honesty I’m not sure how things will turn out for you and your family. I know of some people who were late diagnosed by 6,7 and maybe 8 years or something greater and some of them are doing fine today. Then again I know others who were diagnosed late and are not doing so great. But please don’t panic because I’m not very familiar with all of this (late diagnosis I mean) and there is always hope!
I think the main concern right now is just get him on the diet, drinking his formula (which I’m assuming his is on?) and taking blood tests. With time things will get better and he will eventually get used to this lifelong diet, but I won’t lie it is going to take him some time. I wish you, your cousin and family the best of luck with this! Hang in there and if you ever want to talk I’m here! nBreanna n16 CPKU

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