I too was you, not too long ago. Our son just turned a year. At birth he was classified as HyperPHE and we were told he wouldnt need diet. However, about the same age as your child, we found out he is Mild PKU, and does require diet.
It was much more stressful then, then it is now. We are slowly learning and growing with him. The easy food, have to be more creative to achieve. The quick hot dogs and pasta, (a common lunch here — In Canada) won't ever be an option for Jacob, however, we are finding subsitutes. I now make his modified Lasagna and Shepards Pie like a pro!! I enjoy creating his modified foods. Granted, we are extremely lucky in Ontario, and coverage for food is wonderful compared to many other areas in the world.
As Clenk said, we seem to measure the same way you do. Jacob, while on diet, seems to hover between 240 and 300. We have been reassured that he will not develop classical PKU which was a GIANT fear of mine seeing as he seemed to go from Hyper to Mild.
I'm available if you ever want to email me. I used to live on this site, however, with upgrading my phone to a smart phone, its rare I get to the computer as often as I used to!! A message will alert me ><><I think><><
Have a great day, this site is WONDERFUL. It was so helpful to us when we began Jacobs adventure!!