Community Discussion Forum New to Many Questions Reply To: Many Questions

Avatar of Breanna

I agree with Keisha, Eczema and poor behavior are both defintally the major signs of high phe levels. As for the formula, have you thought of trying to see if you could get him a different formula? There are soooo many things out there that you could get your hands on for him I’m sure you would beable to find something he likes. Phlexy-10 has alot then there is Phenylade, Phenex, Vitaflow, SHS, you’ve got alot of options and it won’t hurt him to try any of them. I almost refused to try new formulas back in September for my dietitian and I almost missed out on find the formula that I fell in love with!! I used to have alot of the formula problems he’s having, and I’ve made basically a 180 turn because now I almost always have formula with me.
Or you could try adding something to his formula like kool aid, juices, nestle strawberry or other flavorings. Also maybe try to have him drink his formula separate from meals. I know when I drank my formula with meals when I was younger it just got to be too much. Between the calories in my formula and the actual meal it was just way to much food for my little body to handle a one you know? And I would also say defintally take him to his medical geneticist/PKU doctor or nutritionist/dietitian and figure out for sure how many phes he is supposed to have then stick to that. I promise you, you will see a great change in him and for the better! nHang in there and I hope your problems are solved soon! nBreanna n15 (16 soon) w/CPKU

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