Mama813 – I know you posted your question a few months ago…but I just wanted to say Hi and that I am a new Mommy….Abby was born Dec 1/11 and she has HyperPhe. Her levels have been pretty good thus far and as long as they stay where they are then no special diet will be required. However, if they go over 360 then she will need to be on a modified diet. I am not too concerned about it right now since I am breastfeeding. I think the true test will come when we start solids. That is what I am most afraid of, is how do I start solids. We have a dietitian so I am sure she will help us cross that bridge when we get there.
As for now, we have to get her blood tested every month to make sure her PHE levels stay low. I am so happy I came across this website. It is nice to know we are not the only ones going through this. It has been an emotional rollar coster the last couple months.