Community Discussion Forum New to PKU and ANOREXIC

Viewing 5 posts - 1 through 5 (of 5 total)
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  • #7512
    Avatar of Tracie

    : Hi iam PKU and Recovering Anorexic. nGoing back on diet. nCould use all the advice i can get.
    I am very open and honest.
    I just need to talk to people who understand… nAny words of encouragement accepted as well as critisim…( Spelling Poo )

    Avatar of Morgan

    Hi Tracie, Whilst I wasn’t anorexic I did/do have the symptoms of an anorexic. I’ve been less than 100 pounds since I was about 13 or 14 and I am now 31. Only just this last year have I been up to 105 or so. I think I have a fast metabolism as my father was rather thin as well but it makes it more difficult for us as we can’t eat a lot of foods which would make us gain weight. Right now I’m trying to take as much of my formula as I can because my body is using that for energy for the most part. I’m also trying to eat more but the formula tends to fill me up.

    Avatar of Tracie

    Hi There,
    I am so glad to hear from you.
    I struggle everyday with the amt of food intake.
    I have not started on formula due to my insurance has not started yet.
    I am considered borderline PKU , but i try to eat as much as i can. nDo you eat alot of veggies?
    I do ,but never feel full.
    I am not sure ho much i weigh do to i threw out my scale,but an example i wear a size 1 on a good day. nMay i ask what kind of foods you eat as well as formula? or even how you cook them? nThank you so much for replying.
    I actually thought i was the only one with PKU/Anorexia. nMay i ask where you live at?
    If you do not mind i would like to add you as a friend so we can give each other support?
    Once again Thank you nTracie

    Avatar of Breanna

    Like Ddraig I’ve always been small. I’m 17 and I have not yet reached the triple digits yet. We are pretty sure that my size has nothing to do with my PKU because my younger sister who will be ten on Friday has PKU and she’s average size for her age. The majority of my siblings (all seven of them) are small. nWe also don’t think my size is related to my diet because we thought by starting Kuvan I would gain some weight because I would be eating more natural protein…but I still the same size.

    Avatar of Tracie

    I can totally relate Bre.
    Currently i am eating a baked butternut squash drowned in butter and sugar.
    My problem is if i go under 100 lbs my Dr puts me in the hospital. Not fun.

    Especially when its in a MHU ( Mental Health Unit ).
    That alone is scarey enough.
    Anyways so my Dr put me on Clonidine.
    It is suppose to help me gain weight.

    I have not been over 103llbs for about 10+
    yrs. My smallest weight is 93lbs. about 4 yrs. ago.
    I just want to gain normal weight.

    Any suggestions?


Viewing 5 posts - 1 through 5 (of 5 total)
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