Friday, February 25, 2011

Increase of Ten

     It's been way too long since I have posted anything.  What can I say I've been busy.  I AM a mom of three and I work from home.  If you ask some, that should give me more time to get things done.  Bus alas, I do like to sleep, eat, and actually enjoy time with my family!  So here I am writing about Lily and her food again. 
     She went to the PKU doctor yesterday and everything went great.  Over the past 2 months, her blood scores average 1.5, which is a little low but still good.  I talked to the team about raising Lily's daily amount of phe.  It is currently 125 per day.  I know that kids top out between the ages of 2 and 3.  So, I'm thinking"Let's get it going and see how much she can handle!"  The doctor and dietitian are thinking "Why mess with what is working?"  I totally get their point, they are the professionals, BUT I AM THE MOM!  I want to know what it will be like for my little lady in the future.  I want to know that she will be able to eat more phe in the future.  ARGHHHH
     So, the team decided that we will raise Lily's phe intake.....but only by 10.  Yeah (deflated)  If after a few more blood samples, Lily's levels are still low, then her intake will be increased by another 10.  I know that it is easier to increase a little at a time.  That allows us to know exactly how much she can handle.  I get it.  Really I do, but I'm still the mom who just wants to have an answer.  What is Lily's top intake?
     The dietitian told me that she has an adult with classic PKU who is on a daily intake of 150 phe!  Ouch.  I can't even imagine getting full by having such a small of amount of phe allowance!  I suppose that could be Lily, who knows.  Then the dietitian said that she has another adult patient, who is allowed 735 phe a day and he is still considered Classic PKU!  Now that got me excited!  I'm hoping that Lily will be closer to this number.

1 comment:

  1. Wow! That is a low tolerance. I hope that the increase works out and she handles it well so you can keep adding more phe. We are at 230mg/day right now. We tried Kuvan but was only able to get up to 270mg/day, so we stopped that. For now, we will work with the 230mg/day. Sometimes that is a LOT for my 4.5 year old who thinks he doesn't need to eat anything!

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