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Quick Facts

Hey all!!

First a small update on Lucas: we still do not have his phe levels balanced out but we are working hard with the dietitians to get past this current growth spurt! I have a feeling, call it Mommy instinct, that his next levels we get back on Tuesday will look much better.

But I wanted to drop some quick facts about PKU that people have asked me recently. I love when people ask me about Lucas' current levels and ask me PKU questions so don't be embarrassed or worried about asking me anything about it!!!


  • Luke will never out grow his PKU
  • We may decide to try one of the current drug options in a few years to improve how much food he can eat but it is not something that is cured (yet......)
  • Everything Luke eats and drinks must be recorded and counted in a daily diary
  • Some foods are very low phe naturally (apples, grapes, pears, and more) so he can eat a lot more of them then some foods that are higher (potatoes, peas, cereals) and some processed foods that are not so good for us he can count as free - like pop that is not diet, some frozen treats, some candies, etc...
  • I have to plan each days estimate value so I know about how much each meal to feed him and then keep track though out the day
  • He has gone from a tolerance of ~330mg/day to his current ~550mg/day (however this could go back down) 

An example of 550mg of phe
(Luke's WHOLE DAY) would be one small bowl of cheerios floating in one cup of milk.


Well Little Man is 8 months old today and he is growing and changing everyday it seems. Next up for him is crawling (not far away now) and maybe these darned teeth of his will decide to finally come though!!

Love you all & hope your summer is fantastic!

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