Community Discussion Forum Parent support what is the real efficacy of formula ?

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  • #8779
    Avatar of medina

    Every time I have this question in my mind , that what is the real effect of formula ?

    Does it decrease the phe ? or just it doesn't have any phe ?

    if it decrease the phe of the body , so the pku people could use phenilalanine and then use the milk to decrease it in

    their body .

    if it doesn't decrease the phenil , so why when my son's phe is 14 , after using formula , his phe decrease to minor

    number ?

    Avatar of carrie

     It was explained to me that the formula is just like regular formula except it is broken down so far that they could actually remove PHE from the protein strains so that the child can get all of the extra nutrients and the other amino acids in the quanity that they need – except PHE

    But since all PKU kids do process PHE- even if it is just very slowly- and since we all need at least a little PHE- we couldn't just give our kids the formula- they need a little bit of breastmilk or something that has PHE in it – just not too much. 

    Avatar of Cook4Love

    The formula is the key to the diet – it provides the protein your child needs (without the phe), as well as nutrients, minerals and calories.  It provides about 80% of your child's nutritional needs.  Since there is no food that naturally contains the other amino acids in protein without the phe, it is the only way to provide your child's body with what it needs for growth.  You cannot maintain appropriate phe levels without it, because your body would not be getting enough calories or protein and as a result would become catabolic (break down muscle in your body which is high in protein and would cause levels to rise).

    Avatar of medina

    thank you so much for your replies .

Viewing 4 posts - 1 through 4 (of 4 total)
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