AceMommy, I was so glad to hear what you said about levels leading to brain damage (15 or above for a month+). I have a beautiful son who will be 4 months in just a week (I can't believe it) and he has been classified as a 'moderate PKU' early on. Due to several growth spurts in the last couple of months (he went from being 70th percentile in height at birth to 97% by 3 months), he has also gone through a couple rapid changes in his Phe needs and consequently, in blood Phe levels. Once his blood Phe dropped to .42, the dietitian decreased Periflex Infant by 15 g, and the week after we were up to 11 mg blood Phe level. Long story short, he has been around 10 mg for the past 3 weeks and I was worried sick that it would have permanent effect on him. The dietitian finally bumped up his Periflex intake up by 20 g per day, so hopefully, this will bring the Phe level below 4, so I can breath easier.
It's been quite a journey so far. I am at a point when most days I am grateful for such a manageable condition. Although, there are still days when I am worried sick.