Viewing 8 posts - 1 through 8 (of 8 total)
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  • #6764
    Avatar of Anna
    Poppycorn95
    Member

    Hey everyone. Well I’ve had my foster daughter for three weeks now. We’ve done three PKU blood draws on her. Her levels were 8.5, 8.0, and 10.4. I’m at a loss as to how to get the levels down.
    The dieticians keep telling me that the food journals are perfect, and that the measurements are correct. They keep telling me that her eczema looks 98% better and that she seems so content and happy now – not bouncing off the walls wild.
    They have taken her from 6 Tbls of milk, to 4 Tbls, and starting tomorrow to 2 Tbls. They say they hope she doesn’t bottom out, but that since they have never had accurate journals on her before, that they aren’t sure how much intake she needs.
    They mentioned she might have been going through a growth spurt, or that maybe since she has been sick that that could have thrown her numbers off. Whatever the cause, I’m feeling horrible that we haven’t been able to get her levels under control.
    They keep telling me not to worry, that we’ll get this figured out. They say they knew it would take a while to get her stablized…

    #6765
    Avatar of
    Anonymous

    hello poppy corn,its me again. i know its not something u want to hear, but it will work its self out .when i was young my levels bounced all over the place even got as high as 21 and 22, it wasent untill the stress in my life was resolved did they start loweing themselves. also sometimes i wasent eating enough. this may be her case. as if ur to low ur levels will riase just if u were eatign to much. im sure now that there is a journal for her they will be able to figure it out. the only downfall is you may feel like there treating her like a gunie pig as thats how my mom and i have felt at times, but in the end u have to remind ur self that its for a greater good and when they have there answers it will benfit her in the long run and she will have a full and normal healthy life. thanks to you!!! nagain if u ever want to talk more with me feel free to contact me at shutterbug.86@hotmail.com or on my pku website http://pku.bravehost.com as i would love to answer any of ur questions, and be of any help to u at anytime! nAmanda

    #6766
    Avatar of
    Anonymous

    just curious poppy corn but were are u from? if ur close to me maybe i can send u some more info and some books or recipies as she gets older.

    #6767
    Avatar of Anna
    Poppycorn95
    Member

    Thanks Amanda. I’m from Indiana.

    #6768
    Avatar of
    Anonymous

    hey no prob i lvoe to help others, unfortantly u are to far for me to mail u stuff but if u ever really need somethign i can try and help out or email u anything! Merry Christmas and happy new year!

    #6771
    Avatar of Breanna
    BreaMarie91
    Member

    Hey, I’m sure that things will work out in the end. I’m just curious how old is your foster daughter? I have been told that usually when PKU patients go through grown spurts they need to take in more Phe because they are growing. Is she drinking all of her formula? I know sometimes that causes phe levels to rise and also you are defintally right. When she gets sick it is very likely that the her levels would go up.
    How much phe is she allowed right now? It may just be a matter of her being allowed to much and in that case as time goes one with you decreasing phe intake it should work out just fine! I’m sorry that I can’t provide a lot of info but I hope that everything works out and if you’ve got any other questions feel free to ask! I’m sure everybody here, myself included, would be more then happy to help if possible! nBreanna 16 CPKU

    #6774
    Avatar of Anna
    Poppycorn95
    Member

    My foster daughter is 15 months old. She takes 32 ounces of the Phenyl-Free formula a day. And she downs the stuff like it’s Kool-aid! She’s only on 100 mg of food a day.

    #6775
    Avatar of Breanna
    BreaMarie91
    Member

    Hmm…I’m not sure why here levels maybe high. It might just be that she is being allowed to much phe, since I don’t think she’s really old enough to find and eat foods without you knowing. Sorry I’m not much help but I really hope everything works out for you!!! nBre

Viewing 8 posts - 1 through 8 (of 8 total)
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