Tuesday, May 8, 2012


     We just got back Lily's latest PHE levels.  7.1
     That's all I can say.  7.1
     How can she get that high? is what I kept asking myself.  Yeah, she'd been sick with the flu, but I waited about 2 weeks after the flu before I took that level.  When I heard the message, I was floored.  I actually had to play it 3 times to make sure I heard it correctly.

     Lily's phe intake has been fluctuating between 290-305 mg per day.  When she hit 300 (the first time) she had a low phe level of 2.5.  So, they moved her up to 305 (just to see what would happen to her phe levels).  She jumped from a 2.5 to a 5.0!  So, we moved her back down to 300 mg phe/day.  The next blood test came back with a 4.7!  Still a little higher than we'd like.
     The next step, was to move Lily back to a 295 phe intake per day.  Her levels were pretty consistent for about a month.  Ranging from 1.4 - 2.1.  Then we got the 7.1 level!

  We've tried to be very consistent with her diet.  Although sometimes we have to guesstimate exactly how much she's taking in.  Here's why- occasionally we don't have our scale with us, sometimes Lily likes to feed her food to our dog, sometimes Lily grabs extra food off the counter or plate and we don't catch her in time!  We do our best to be diligent about weighing her food and getting her up to her daily goal.  Yes, sometimes we fail.  There are days that Lily just doesn't want to eat.  So we try everything ,shy of inserting a funnel into her mouth, to get her to eat.  Those are the days that she doesn't get her daily intake.  We have seldom ever gone over her daily intake (read about that story here)

     So, the 7.1 is a real shocker!  We've since sent in 2 blood samples and are waiting to hear back.  I'm hoping that the 7.1 was just a fluke.  That Lily doesn't need to lower her phe intake.  I'm hoping that eventually, she'll be able to tolerate more than 300 mg per day.  However, time is not on our side.  Lily is already 2 1/2 years old.  Most PKU patients reach their maximum daily intake level around 3 years old.  No matter what, we'll keep doing our part to keep our little girl healthy!

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  1. I have an almost 5 month old with PKU. I'm so nervous about what's ahead of us with weighing, measuring, etc. We have an awesome genetics team and thus far the dieticians have been great. Even without solids I get anxious for his phe levels. He was up to 16 recently when he had an ear infection and was in Amoxicillin. Now he's at 0.8 so the other (yet safer) end of the spectrum. I'm hoping the level we do today will be good. I love your blog and really like when you post PKU related things. I'm trying to learn as much as I can.

  2. I hope that her levels come back lowered this time. Just remember too that one high reading doesn't mean that she's been that high the entire time since her last reading. It could have been an off day where she did sneak some extra food you didn't catch, it could be from her being sick before, you just never know. Know that you are doing a good job for her and you always do your best. :) Keep it up!


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