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Hi Nicole,
I guess the best way to understand how your son feels is probably to talk to him. Yeah, I know it’s easier said then done . If you want I would be more then happy to talk to you (and your son if he even wants). Do you guys have a good relationship between your PKU doctor/medical geneticist and your dietitian/nutritionist? I know that is one thing that helped me alot because when I got both a new geneticist and dietitian it was alot easier for me to talk about my PKU at appointments.
If you ever want to email me you can email me at
Breanna n15 w/CPKU (16 in June!)

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