PKU.com Community Discussion Forum New to PKU.com Many Questions

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  • #5749
    Avatar of Linda
    auntie
    Member

    I have so many questions to ask about PKU. Should I be keeping a journal of what this child is eating daily? Should I be measuring all his food? I have a great deal of trouble getting him to drink his formula. We add strawberry juice to it but sometimes it still takes him 2 – 3 hours of sitting at the table to drink it. I tasted it for the first time today and it was awful!!! This is just the tip of the question iceberg. nThanks.

    #5751
    Avatar of Keisha
    kmariewood
    Member

    Hi Auntie
    I had a lot of trouble getting Zach to drink his formula when he was that age, but i dont think it ever took 2-3 hours. He didnt stop drinking it out of a bottle until he was in preschool. when he first gave up his bottle i used to make it up very weak and he would drink it out of a cup through a straw. he now drinks it out of a pop top 6 times a day which is much easier. I know alot of people mix different flavours in the formula and like it but Zach thinks it makes it taste worse so he’d rather drink it straight. there are different types of formula he has tried any others? maybe there might be a different one that he will like.
    Everything he eats does need to be counted and it is always good to keep a record but I find I dont have the dicipline to write everything down in a journal everyday so I just write it down on a peice of paper everyday.
    I hope this has been of some help
    keisha

    #5779
    Avatar of Linda
    auntie
    Member

    Thanks Keisha for your reply. The reason it takes 2 – 3hours is that we are also dealing with severe behavior problems. We give him his formula after breakfast and he has to finish it before he gets down from the table. It measures about 1 cup. Then he has lunch and formula again. Then we repeat this for supper. He has just given up his bottle about a week ago. He would have his bottle with formula at home and a cup with juice at school. I wonder how much protein he is allowed in a day. That must depend on how much he weighs and how old he is. His levels are not very consistant. They are all over the board.
    Is ezcema and asthma part of the pku problem. When his skin is at its worst he scratches all day and all night. He scratches until he bleeds and his skin opens up into slits. Some of these slits are so deep I expect to see bone when I put his cream on. Any ideas other than gloves and cold packs on how to get him to stop scratching. nAuntie

    #5780
    Avatar of Keisha
    kmariewood
    Member

    Hi Auntie nEzcema is deffinatly a symtom of pku but I dont think that asthma is. My son has never suffered from Ezcema so Im not sure what you would do about that (sorry). As for the behaviour problems that is one of the biggest symtoms of high phe levels, so if you could find out how much phe he is allowed in a day and bring his levels down Im sure you will see a dramatic change in his behaviour and his ezcema should ease as well. you should be able to find out how much phe he is allowed from his pku doctor or his parents.
    keisha

    #5781
    Avatar of Breanna
    BreaMarie91
    Member

    Hi,
    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

    #6102
    Avatar of Meaghan
    mayrogers13
    Member

    For the formula, break it up. Have him drink a quarter in the morning, afternoon, evening, and night. I used to take about the same amount of time when I was younger and that was because I drank it all at once. Believe it or not, you aren’t supposed to drink it all at the same time. Your body absorbs more of the formula if you break it up into intervals. I never have weighed my food or kept a journal but if you feel it will help you manage the diet, i would say do it.
    Meaghan n18 college CPKU

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