I just got my husband's latest PHE test today. He was recently thrown back into the PKU world. Until two months ago I had no idea what it was. I knew that he was born with the "inability to eat protein" but that was all I knew. When he was younger the Dr. told his mother that when his brain stopped growing he could start a normal diet. He made the transition around age 8 and has been eating regularly ever since. In the past few years he's developed frequent migraines, twitches, depression, and moodiness. That's just not like him so he decided to ask his DR if this new behavior could be related to his PKU. To make a long story short, we were then told that he should have stayed on the PKU diet and we've been working really hard this past month to do what we can. We have an appointment with a specialist on February 23rd but our family Dr. is doing a wonderful job trying to get us through it until then. Without any medicine and just altering vegetarian meals, his levels went from 1197 to 650. So for us not having any help other than the wonderful people on www.pku.com and random internet stuff, I think he's done remarkably well. He has times where he still "cheats" and then he feels miserable the next day. It's amazing the difference a little protein will do. He also cheats on occasion because we still don't have his formula. I've read that it is very dangerous to cut out protein without the formula because he still needs protein, just PHE free. So for now I throw him a bone and give him some cheese and sour cream. Now the hard part is trying to cut the 650 in half. I'm sure once he gets his formula he won't be as "hungry" as he is now. He's continually eating to try and fill up because the things he eats now have a whole lot less calories. We're also waiting to get KUVAN so hopefully that will come soon as well. We do have the PKU cookbook but I don't have a lot of the special ingredients and they are too expensive for us to be able to get them. I'm hoping to be able to get some of the basic ones like egg replacement soon. I also need to get the PKU Food List book. Hopefully I'll be able to get some more stuff stocked up and be able to try some more basic PKU recipes.