Community Discussion Forum Parent support PKU and weightloss Reply To: PKU and weightloss

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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!

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