Viewing 12 posts - 1 through 12 (of 12 total)
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  • #6730

    Hello everyone, my name is Valene and I am a new mom, I have a 3 month old daughter with pku. Just trying to meet some more people with pku or parents of children with pku…

    Avatar of Breanna

    Hi Valene, my name is Breanna and I have PKU. I’m here if you ever need help, I’ll help with anything I can!! nBreanna 16 CPKU

    Avatar of Marie

    I just wanted to say hi. If you have any questions about PKU I am sure that somebody will be able to answer them. nMarie


    I’m just curious as to what people’s initial pku reading was so I can kind of have an idea as to about how much she’ll be able to eat when that time comes…her’s was a “8”…and I want to know what people’s parents told them bout why they couldn’t eat certain things…did they tell them it would make them sick or hurt them? Cuz I don’t want to eat like cheese pizza right in front of her and tell her she can’t have any because it will make her sick or hurt her, because it obviously won’t make me sick or hurt me. I might just be overreacting, but it’s my first time.
    Thanks for any suggestions and help!!! n-Valene

    Avatar of Breanna

    Hey Valene,
    I don’t really know what my phe level was at birth when I was diagnosised with PKU, but I know it was much higher then 8mg/dl like Tanner. I am now allowed 300mg of phenylalanine (which is roughly 6g of protein) a day. BUT I am on a new drug that is in study and so with this drug I am allowed 680mg of phe (as of right now).
    My mom always told me that my body was born a little bit differently. My mom has a severe peanut allergy so she sometimes compared my PKU to that. She never said PKU was an allergy because it’s not, but she did use it to say she cannot eat peanuts just like I can’t eat certain foods. When I was little she didn’t give more explaination then I could handle unless I asked for it, which I rarely did. If you go to in their store section they have a book called “You and PKU” (or something like that) and it is a great book for little kids. Although obviously this would be something for Tanner to have when she is a bit older.
    The truth is, eventually Tanner will go to daycare, school, work or whatever and there will be people eating differently from her. So where the first time she realizes she eats differently is when she is two and she is going out to eat with you or when she is five and starting kindergarten, it will happen. So I wouldn’t worry so much about eating things she cannot have infront of her so much. Especially because there are many companies like cambrooke, dietary specialties, maddy’s and much more that sell low protein versions of foods. Including pizzas.
    I hope I made some sense and helped a little bit! nBre


    Wow, thanks so much!! That really helped!! I’ll have to check out the resources, thanks again!!!

    Avatar of Momofadyangel

    my addyangel at 11 days old her levels were at 28. The doctor wanted to see us right away for her level was the highest she ever seen in a infant. I don’t know how much phe she can have yet. She will be 8 months on the 9th of Jan.

    Avatar of sherrill-ann

    hi i am 25 years old with pku and i have a 6 year lod son and one on the way i have not exactly followd how to count phes but have always had low levels every time they checked them. i know from experiance that if you dont try to explain whats wrong with tanner early she wont understand later and it will be harder for her to cope with as it was wit hme and now i still struggle with it. there are still alot of things i dont know but i am still learning. you have to let her know what she can and cant have and why dont ever lie to her about it make her very aware of it so nothing happens later like for example she goes to school one day and someone gives her a diet soda but she dosent have the nerve to tell them she cant have it because she is affraid of being made fun of. well she knows she cant have it because 1 of the warning and 2 its diet she dosent have to tell anyone if she dosent feel comfertable but can keep it for you or just throw it away later. i hope you kind of understand what im tryin to say if you have any questions i will be here.

    Avatar of dacee

    hello, my name is dacee gillen and i have a 3 1/2 month old daughter that is pku +. I have never heard of pku untill my daughter was born so im tryin to learn anything and everything about it, so i joined this to get some help and talk to people with pku to help me out. im only 21 and i have a 3 year old with seizures so any help would be greatly appreciated. my doctor knows nothing about it and is learning right beside me.

    Avatar of Breanna

    Hey Dacee, welcome to the group! What kinds of things would you like to know? I’ll answer any questions that I can.
    I’m just curious, you don’t have to answer if you don’t want to. Do you know what your other daughters seizures are caused by and is she fine besides the seizures? I’m not trying to scary you, but I was just asking being seizures is a problem that occurs when PKU is misdiagnosised/missed and the diet isn’t followed. nBre 16 CPKU

    Avatar of Kristi

    Hi… nAshley’s levels were in the 20’s when she was about 2 weeks old. They’ve been around 2.5 ever since we put her on the diet. She’s 8 months old now and is allowed around 180mg of Phe per day (I’m not clear on the exact number b/c all I know for sure is that I am allowed to feed her 88mg from her baby food and the rest comes from the enfamil in her formula. The dietician still does that recipe for me, so I know she gets 26g of enfamil, but I don’t know how much Phe that is).

    Avatar of kevin

    how are her levels

Viewing 12 posts - 1 through 12 (of 12 total)
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