Community Discussion Forum Parent support out of control levels

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  • #9190
    Avatar of Grace

    I have a 18 month old son…we are having a really hard time getting his levels back under control is seems that since july they have been all over he is a spiratic eatier and i can't make him eat he does not like most of the low protein foods. he loves the pasta…I am starting  to think we need to give him that 3x a day to give him enough calories, he has dropped his phe tolerence in half and his last two levels were still 9.2 and 9.7, Help has this happened to anyone before we are all wondering how this can happen.

    Avatar of Kenneth


    Often times, from what I've learned, when your child won't eat, or does not eat as much (not meeting his prescribed amount of PHE) as he should for his age, it has the same effect as if he were eating more than he should.

    Have you spoke with your nutricianist and doctor about this?

    That's what I've learned.


    21, Classic PKU

    Avatar of carrie

     sending e- hugs i know how frusterating it can be to have your child have out of control issues!! Is this your first child? I know that my two older ones all had food issues at this time- eating only pasta and veggies when i put parm cheese on them- it was very annoying but hopefully it will pass- keep introducing new foods, stay positive and if they eat pasta 2x a day- then so be it!! good luck! 

    Avatar of Becky

    HI there,

    I am on a very strict diet myself and I am being monitered 3x a week! 

    I agree with kennyboy, it could be because they are not getting enough phe…..however, my levels have gone up simply when I am not getting enough calories! 

    Does your lil man eat enough calories? When we are restricted on how much protein we can have, it can be tricky to get enough calories in (thats my problem).

    My levels tend to go up when Im not eating enough generally so if you can find something he likes with calories in I agree with clenk that even if it is pasta twice a day, then it would be better than having high levels?!

    I hope I have helped x x

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