Tuesday, November 22, 2011


     We've been really lucky with Lily's phe levels.  When she was first born it was in the 50's, but after starting her "diet", she was always in the 2 range.  For the past year, she was always below 1.5.  Usually around 0.5.  I know that's super low.  But really she was eating!

     Last week, we saw our dietitian at the yearly Illinois PKU meeting.  I mentioned that I sent in another blood sample and we joked around that we'd be lucky if she hit the 1 mark.  We had just raised Lily's phe intake to 315 per day.  Well, the other day I got a call from the dietitian.  Lily surpassed the 1 mark.  Her phe level was 5.1!  Whoa.  We had only increased her phe intake from 300 to 315. 

     That's a small increase, so I was super surprised that it had jumped that high.  Dianne assured me that everything was fine.  That the average goal is between 2-6 with an ideal goal of 2-4.  A score of 5.1 was not going to hurt Lily.  In fact, Dianne was glad that we'd finally increased Lily's phe level.  She had just hoped that it would have happened more slowly! 

     We decided that we'd lower Lily's phe intake to 305 and see if that made a difference.  Dianne assured me that the 5.1 level may have been a one time thing.  If I had taken the blood sample to soon after eating, that can have high results.  If Lily was sick or was starting to come down with something, that can have high results. 
     We waited about four days of Lily on the 305 phe intake and took another blood sample.  I just mailed it out yesterday and will have to wait a little over a week to get the results.  Maybe longer with the holiday week.  We'll see. 

     I know that I have been blessed that Lily loves her milk, eats the low protein food, and has consistently had low phe levels.  Trust me, I know I could have it much harder.  I was just floored that the result was 5.1!  Deep down, I knew we'd hit Lily's threshold eventually.  I just was hoping that it wouldn't be for awhile.  I really just want my little girl to be able to tolerate as much phe as possible!

For my PKU readers...what are your pkuer's favorite foods?  How do you get them to consume their daily phe intake?  Sometimes, we rely on milk, yogurt, and real bread to get Lily to her 305 level!  Shhh, don't tell anyone!

1 comment:

  1. My son isn't big on most lo pro foods. We have a phe intake of 250mg/day. He does well getting that in usually (in fact I looked at it a few minutes ago to figure out dinner and he's already over!! Ack!). If he needs to make up points, we'll use goldfish or Eggo Waffles. That usually does the trick. :)
    Good job on always having such great levels!!


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