I have a 3 month old with CPKU and a tetrabiopterin deficiency. I haven’t talked to anyone about it really because I guess that means I’m accepting the diagnosis and that it won’t change…wow, I’m definately not ready for that! I have a 3 year-old without PKU and Tucker was born with CPKU his enzyme doesn’t work at all I guess. Anyone else in the same boat, I’m curious what will happen becuase they haven’t been able to get his levels under control. If you have a babe that’s older – how do they grow without protein?