PKU.com Community Discussion Forum What’s the Phe? phe management

Viewing 6 posts - 1 through 6 (of 6 total)
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  • #5529
    Avatar of Bethany
    sjimnbeth
    Member

    Just starting my son on the diet (10 months old). We are supposed to keep him at 800mg/day. I did a four day count, and then checked his blood levels. He was 4.1, so they want us to stay at 800.
    Here’s my question… with teething and colds, he is only taking about 450/day. I added dry milk to his bottle tonight to get him up to 750. I know he’s been eating less for about the last week, today is the first I’ve made sure he got his full amount. If you drop your amount, how long until the body starts to breakdown muscle to get the required phe. 1 day, 1 week? I don’t want his level to sky rocket. I’m going to call the dietician tomorrow, but in case I can’t get a hold of her, does anyone know?
    thanks

    #5532
    Avatar of Breanna
    BreaMarie91
    Member

    Try not to worry, which I know easier said then done right? I remember going two months once with high levels and then my dietitian thought it was because I was being allowed to many levels so she lowered my allowment alot. Well, turns out the only reason my levels were high was because I was doing alittle cheating that time, so my levels went down alot. My levels were low for about 3 months before we fixed this problem and nothing has happened to me.
    I guess that question is alittle hard to answer because it always depends on the individual but I can defintally tell you one day, or one week won’t hurt him. It’s a very slow progressing type of a thing, so as long as you make sure he does get some phe in he’ll be fine. If your still worried, then maybe just give your dietitian a call to get an immediate answer, but I’m sure he’ll be okay. nBreanna

    #6155
    Avatar of Meaghan
    mayrogers13
    Member

    A few months? Wow you were better than I was Bre! lol For 10 years of my life I never had a level below 8 and its supposed to be about a 4. I’ve never had problems with having too little phe and now I am extremely strict on my diet. I barely eat anything not “low-pro”. There isn’t a set amount of time that the body would start to break down muscle into phe. As long as he is eating the body won’t break down muscle just as it would in a, i guess you would say, normal person. I think you have nothing to worry about. As of right now your soon is already allowed more than double what I can eat and I’m 18. I can only have 225mg/day and I’ve never had a problem.
    Meaghan n18 w/ CPKU

    #6158
    Avatar of Breanna
    BreaMarie91
    Member

    Meaghan, nUntil I was around 8 I had problems with getting all my phe in because I wouldn’t eat anything. Mainly because my formula always filled me up. Then when I was around 8 my mom stopped taking me to my appointments and starting making my dad take me, for many reasons one being that my mom couldn’t stand my dietitian. Then from then until last September my levels were usually somewhere between 6-12mg/dl, rarely lower then that.
    In Sept I finally got a new dietitian. Before I went to go meet her for the first time we did a level and it was an 11.6 I think. Then we did another in Oct and it went down to 8 then the one in Sept came back as a 6.9 and since January my levels have amazingly been between 2-6 like they’re supposed to be (except one). So don’t think I’m perfect I’m far from that. nBreanna

    #6162
    Avatar of Meaghan
    mayrogers13
    Member

    haha, I know what you mean. I just got back from my deititian and she brought out my old chart. My levels we 17, 14,11, 10… all over the place. Then she asked me what the heck I did to get my levels so low now, a proud 1.77 :-)Honestly… I don’t even know.
    Meaghan

    #6165
    Avatar of Breanna
    BreaMarie91
    Member

    Congrats on the low level. The last level I did was the end of July and I think it was a 4.5. Then again that was after I got back from PKU camp so I was eatting all low pro foods so I kind of figured it wouldn’t be high. It wasn’t like I could have ate more phe then I was supposed to if I tried.
    And yep that would have been me awhile ago, levels everywhere!

Viewing 6 posts - 1 through 6 (of 6 total)
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