Community Discussion Forum Parent support PKU and weightloss

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  • #5314

    My baby wont eat.
    nIm forcing her and shes taking aprox half of what she should. Im freaking out about weight loss and raised phes. any experienced parents out there?

    Avatar of Breanna

    Don’t panic, everything will be fine! Both me and my sister went thru a phase like that and we’re fine! I went thru that phase when I was maybe 3 and 4, I wouldn’t eat at all and I wouldn’t drink my formula for awhile (it worried my parents more because I was already very tiny). nMaybe you could contact your dietian and see if you could try new formulas, if might be that your baby doesn’t like it or her stomach can’t hold it. I know that I used to drink phenylade and it was so thick sometimes I would throw up, just please don’t completely stress! I know that PKU is new and confusing and while the diet is extremely important I’ve learned over the years not to completely stress because if I got a few phes over or under my intake it isn’t going to hurt me. nBreanna


    thankyou. You sound like you totally got a hold of this condition! You say you and your sister have PKU? Do you have other brothers or sisters who dont? What formula do you drink now?

    Avatar of Breanna

    Yes me and my 8 year old sister have PKU and we have 4 other sisters and a brother who don’t have PKU(my PKU sister is the 6th child and I’m the 3rd). I guess I do have a control of this, mainly because I’ve lived with it all my life. I just want to emphsize how important it will be throughout your daughters life to think positively and treat how you would treat any other child. It’s always sad when an adult or teen goes off their diet because it causes many problems. I’ve noticed alot of them were either the children that had parents who thought negatively of their PKU and made it a bigger deal then it has to be or they were the children who weren’t allowed to help control their diet and then are rebeling. So as your daughter grows up think positively about her PKU (after all their are other deadly things out there we could have) and let her help with her diet and making her formula when she’s older and everything will be fine.
    My little sister drinks Phenex 2 unflavored and I drink what is called the PKUexpress coolers (they come already made in juice pouches). Then I take xphe maxamum and they come already made in juice boxes. I used to take Phenylade chocolate and then before taking that I drank many different formulas, I hopped from one to another all the time because I couldn’t find any that I liked.
    Anyway, just don’t panic I can imagine something like this might be new and even scary. I can tell you when I was little there were days I went over in my phe intake and days when I was under and some days when I wouldn’t drink my formula but I’m fine. I’m almost a straight A student, I dance and compete with a local dance studio, I’m an assistant dance teacher and I’m just like all of my Non-siblings.
    I hope everything goes good and this phase passes soon! But if it doesn’t and your still worried then contact her doctor or dietian, after all that’s what they’re there for, to help!

    Avatar of medina

    I have the same problem. some days my little baby doesn't have any relish to eat milk. my dietition said to me that his regim should be stable. otherwise  his weekly phe test coulden't be right.

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