Sunday, March 27, 2011


     A few weeks ago, Lily's phe level was increased to a whopping 135 intake per day!  (Can you say sarcasm?)  For those of you that don't know about PKU phe levels, this is extremely low.  So with this slight increase of 10 phe, I was hoping that Lily's next blood level would be low and that would cause the dietitian to increase the phe intake again. 
     Shortly after the increase, Lily got the flu, so it took us about 2 weeks to get an accurate blood sample.  The dietitian called a few days ago with the results from Lily's latest blood sample.........drum roll please......
PKU version of the Bible!
Lily's phe level was 2.8, exactly where it should be.
     I know how important it is to keep her levels in the 2-4 range.  I WANT her levels in the 2-4 range.  But I really wanted it to be so low, that they would increase her phe intake.  I've said this before, PKU patients top out at around the age of 2-3.  What Lily's phe levels are at this age will be what they are forever.
     It's a little early, but I'm starting to think that Lily is just going to be one of those kids that has a low phe tolerance.  Her initial phe levels were in the 70's!  Right after diet, she dropped down to the goal range of 2-4 and has never gone over.  The highest that she's ever gone was 3.5!  That is such a good thing, but with the phe intake of 135 there isn't much wiggle room on what she can eat.  We definitely will be using a lot of the medical grade low protein foods, fruits and veggies.

     The other day, she was really low on her intake, because she just refused to eat.  So I measured out some of my whole wheat bread.  I found the phe amounts in our book and decided this would be a quick way to catch her up for the day.  The good news-  she absolutely loved it and it brought her to where she needed to be for the day.  The bad news-  it was honestly like 3 bites!

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