I have a 16 yr old son nonpku with a different mother, and a 2 1/2 yr old son nonpku and a 16 mo daughter nonpku with the same mother. Both full siblings have been retested and should have the results back tomorrow night. The sister however has the classic ‘look’ of pku according to what I’ve been reading; more so than my daughter with pku. It has been helpful to read of older teens and young adults who have managed pku well and all that they have accomplished. It has even, in a way, been helpful to read of pts who went off diet and what has happened because of that. I have come to the realization that with careful monitoring and diet, that she will be well and accomplish much in life.
This is the first time I’ve ever posted to a discussion board or joined a group or anything like that, so don’t know all the ‘rules’ but I hope to make contact with others who can help guide me through the ‘human’ side of things. The things that the doctors and np’s and nurses and dieticians can’t know.