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.
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). Brenda http://www.cookforlove.org