Phenylketonuria (PKU) Support Group

Phenylketonuria [PKU] is a human genetic disorder, in which the body lacks phenylalanine hydroxylase, the enzyme necessary to metabolize phenylalanine to tyrosine. Left untreated, the disorder can cause brain damage and progressive mental retardation as a result of the accumulation of phenylalanine and its breakdown products.

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  • deleted_user

    new treatment

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    have any of you heard of the new treatment pegpal.. my friend is on it and she takes 2 shoots on monday and 2 on friday in the stomach she says the needle is smaller than an insulin needle and her levels went from 21 to 1 . " So I need to show you all about the new drug from bio marine I'm on, it's called pegpal and my protein levels went from a 21 to a 1..... I'm able to eat whatever I want...
  • joshpku83

    Intro

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    Hi my name is josh Miller I am 34 years old. I live in Adrian Mi. I have Classic P.K.U I have been on the pku diet my whole life with some changing formula every year it seems like. I'm interested to hear stories and people's personal challenges:)
  • deleted_user

    treatable or too late?

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    Hello all,I have an infant with CPKU and is today 9 weeks old. He was diagnosed with CPKU in week 8. Somehow the results of the newborn screening (and subsequent blood tests) only came in in week 8, which confirmed his condition. My son was put on the special formula in week 8.I have been reading that treatment needs to start as early as 2-3 weeks old to prevent and form of intellectual or...
  • deleted_user

    School reachrge

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    Hello, Im Bo van den Bosch and Im doing a school project about the PKU diet. We, my team and I, are looking for way to make the diet more bearable. Unfortunately we cant change the way the nutrition supplements taste so were looking for another way. We have several ideas. For example making a book with recipes, which is clear and organized. However, we have never experienced what it is like to...
  • AelitaJezebelle

    Hello, all

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    So, introducing myself a bit and sharing my own experiences. I have hyper-phe, as does my older brother. However, my brother ended up slipping under the radar when it came to testing him for the disorder (as I've seen some people mentioning happening to them or someone they know), and he was not diagnosed until 4 years later when I was born and had the same test results as him. Seeing as he'd...
  • deleted_user

    hypothyroidism?

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    So, after fighting off fatigue and sickness for almost 6 months, I have been diagnosed with hypothyroidism... I am on my way out to pick up my new script... I noticed on the rx's website that one of the levels that affects my under active thyroid is tyrosine... i know my tyrosine levels have been checked with my phe levels in the past...... ok heres my point, does anyone know if pku and thyroid...
  • deleted_user

    Mushrooms & Eggplants?-Potential Sources of Lo

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    Mushrooms and Eggplants maybe a natural source of low-phenylalanine protein? Is there types of plants that are better? http://www.livestrong.com/article/423713-fruits-for-a-pku-diet/ (Also mentions other food groups.) I don't know if I'm borderline PKU or not, but as a precaution I definately avoid stuff like Aspertame. Anyways hopefully this helps.
  • deleted_user

    Borderline PKU

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    Hi i just recently rejoined this group. I left this group originally cause there wasn't much discussion going on etc. My story, i'm so borderline pku that it didn't even show up on the doctor's tests, and therefore I don't get any pku supplements, etc. I have known this for a couple of years and have tried to treat this by avoiding aspartame, and replacing some of my intake of grains and...
  • deleted_user

    getting back on my diet

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    I have been off my diet for three years and i'm slowly getting back on. I just got my insurance card in the mail so it will take awhile before I have my juice regularly and i try to drink it when i have the free samples, however, when i drink it and then don't have it for awhile i have these horrible headaches. I have cut meat and fish out of my diet and i don't know what to do to make these...
  • deleted_user

    new here

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    just dropping in to say hi! im new here and trying to check things out and get support
  • deleted_user

    never been this frustrated...

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    my last level was 487 and the one before that was 295. i didn't do anything different except go down to 5 scoops of phenylade instead of 6 because my tyrosine levels were too high... but i guess that wasn't it because my tyrosine levels are STILL too high... i really don't understand and it's making me worry because my fiance and i are going to try to get pregnant soon cause i've been on my...
  • deleted_user

    Memory

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    Does anybody have a problem with memory? I can remember things from sometime back,but when doing things I must one task at a time,or I forget something,or get confused.Please reply?
  • deleted_user

    Dietary

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    Hi Everyone, My name is Margaret I am 16 years old and until very recently my dad has taken care of my diet for me. My hospital think's it is a good idea for me to take over so I have somewhat of an idea of what to do in a couple of years when I head off to school. Of course the first thing I wanted to do upon my independance was shove everything I can't eat down my throat, and granted I may have...
  • deleted_user

    I need some help!

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    As my profile says I am 27 and I have a 3 yr old boy. I was half on diet when I got pregnant. I was not planning the pregnancy and in other 'bad' words it was a oops. But there is noting in this world that I would give up to not be with my son. He is my light and joy each and every day. The only problem is that when I was 17 i went off diet and I am having a VERY hard time getting back on. Ido...
  • deleted_user

    Formula

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    If you eat something that is kind of high in protein(like regular pasta, hot dog etc) do you notice if your formula kind of counter acts it or not? My dietician tells me the formula helps out some.