I am new to blogging and new to PKU. My name is Julie and I had my first child on February 9th in Anchorage, AK. He is a healthy and happy baby boy. When we first got the call that his metabolic screening result came back abnormal I had no idea what to expect. I, like so many people, had never heard of PKU. We thought maybe Ashton was diabetic (we had no idea what the newborn screening even tested for). My husband met me at our pediatrician's office where a doctor we had never met (our regular pediatrician was on vacation) tried to explain PKU to us when he very obviously didn't know anything about it either. He shoved an internet printout explaining PKU at us and apologized. The whole meeting lasted no more than ten minutes and my husband and I just sat there in complete shock. The only words I heard were "mental retardation beginning at 6 months of age." I left the doctor's office thinking that I would have to watch my son slowly deteriorate. We were so heartbroken. There is no PKU clinic in Alaska. I think there are only about 50 people in the entire state that have PKU. So it was a rough few weeks after we initially found out the news. The pediatric nutritionist in Anchorage told us that Ashton had to be actually diagnosed with PKU in order to start the formula and since his second blood test, the diagnostic test, was held up for some reason, we didn't start Ashton on the formula until over a week after we learned he had a heightened phe level. The formula was there, they just wouldn't give it to us. We learned later that he should have began it right away. It is frustrating to me that so little is known, even in the medical community, about PKU. We need to raise awareness, especially in places with a small, spread out population so that no parent of an infant with PKU has to leave a doctor's office without the reassurance that their baby is going to be okay. Now that I know more about PKU I just feel thankful. I'm thankful that there is a newborn screening test that tests for PKU, I'm thankful that PKU can be controlled by diet and that my son can be perfectly healthy. Ashton is over 4 months old now and he is so active and bright. I do wish that there was a better support system here in Alaska - I would really like to get in touch with other people who have PKU and/or family members with PKU.