Viewing 7 posts - 1 through 7 (of 7 total)
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  • #5709
    Avatar of mary

    hi i am new to
    i am here 2 converse w/ other adults
    that have p.k.u and 2 tell my story u,all
    that want 2 know about my story, i am
    46 years old, i have 2 other siblings
    w/p.k.u. they r worse than me. drs did not know that my 2nd
    oldest sister had it untill she was 2 years old. so then
    it was 2 late 2 give her formula 4 pku,brother is the worst 1
    he is retarded, they did not find out in time 4 him either,he
    was a very sick baby he had a very ,very high fever, that caused convoltions,that caused brain damage but i would not
    trade him for anything in the world he is 2 years older than me. and it is very hard for my mom now b/c he is moore demanding now that he is older and she is 73/74 years old
    i have another sister she is the oldest she is normal
    she got the geans that break down the protin/ she is 53 years old so thats part of my story.i my self feel very guilty for
    my mom,dad/no life for them.

    Avatar of mary

    hi i am back: my name is
    mary-jo i have been off the dite sence
    i was eight years old. my mom just did what
    the drs told her too do. so i dont blam
    my mom,or dad 4 this it just happiened. i was born in 1961 they did not know any thing about this not even the drs 4 pku
    it was very new even the 1 dr that knew very little back then
    he worked in nyc then we had 2 go there, another dr wanted 2 study us i calf. wanted our family to move there. we were the
    very 1st family in oswego to have a family of 4 kids and 3 of us has pku very rare drs said. my oldest sister has told me
    about getting alot of brain tests done when i was basiclly
    a baby in nyc.
    thank you
    for listing

    Avatar of Breanna

    Hi Mary-Jo!
    I’m Breanna, I’m 15 (soon to be 16 ) I’m the third out of me and my 6 siblings and only me and my 8-year-old sister have PKU. So are you on your diet to this day? Sorry if you wrote that and I might have missed it. I’m glad to see that you seem to have a great spirit towards things, but I’m sorry to hear what happens when doctors jump to conclusions to fastly. nBreanna n15 w/CPKU

    Avatar of Tracie

    Hi angelears, nMy heart goes out to you all.
    I am 1 of 4 girls in the family,and i am the only one with PKU.
    I was born in England,and when they found out i had PKU they immediatly sent me to Los Angles Ca.
    I was born in 69. nSo i know what you mean by Drs. not knowing. nYou sound wonderful,and a great sibling to have. nUnfortunatly my family did not believe the Drs. because he said i was borderline PKU. nSo my Mom took me off diet at a young age. nMy sisters did not care too much about me due to they felt i got all the attention.
    So when i went off diet my family was happy.
    In the mean time I couldn’t hold a job,i was violent towards others,and then i started with tremors. nFor some reason my family thought i was just a class clown.
    I flunked out in school,and barely graduated with 1.7 in 1987.
    A number of years later i put myself back on diet,and to this day my mom still does not think i have it.
    Talk to me anytime i am always on. nTake care, nTracie-PKU

    Avatar of Lindsey

    Hi my name is Lindsey and I have been off my diet since i was probably about 12. I still ate low Phe in front of my parents but even when I was 2 and 3 I did everything i could to sneak fod for myself.  But my mother tried her hardest to keep me on the diet. Fortunately the doctor's informed my mother of my condition after a couple of weeks so they were pretty well prepared. They just did not expect I would be so against it.  I never thought of any consequences I just did what iwwanted.  I am now 22 going on 23 and I have been learning more and more about what can happen, and it's very scary for me! I do have eczema, insane irritability, anxiety and depression, and I have so much trouble remembering things I can feel it starting to affect me. I have decided to try and get back on a low Phe diet but it's so duscouragin because the amount of exchanges I had when I was little barely seem slike enough and I'm not sure what else to go by. You are such strong people and it seems as if every one have you have made so much of what you have and your optimism.  It gives me hope even if I may be too late to prevent most of it…

    Avatar of laura

    Hi, my name is Laura, I was strictly on the diet til I was about 21, decided to relax it a bit then.  I think when it comes to the doctors I feel exactly opposite to the people above, I really don't feel any different on or off my diet.  I still take the amino acid suppliments.  I'm now 32, don't have any kids, but a gorgeous husband.  I don't have anything that I can really attribute to PKU, although apparently I am the 'classic' kind.  I live in Glasgow in the UK, have given up on the doctors that we have here, have fought with them constantly since I was 13, and because I was able to ask questions they didn't really like that.  I ask difficult questions that I expect an answer to as they are the self proclaimed 'experts'.  I really disagree with this.  WE are the experts, we are living with this on a daily basis, they clock off after their shift and probably don't give us a second thought.  Sorry about the rant but I just believe most of the time doctors just don't list to us.

    Avatar of Nicole

    Hi Laura…

    I am from Irvine in Scotland, But i go to the clinic in Glasgow, used to be the Queen Mothers but is now based at Southern General, Do you go to these Metabolic Clinics, i found them really nice and very helpful and there always encouraging and ave helped me bring my two little girls into this world perfectly healthy.

    Do you guys have Facebook? there is a great PKU support group on there which my good friend lily invented and there is a great chat room for all PKU'ers, we listen to music on there while having a good wee chat or we're on the support group with help and advice and sharing pictures of our LP cooking & Baking or just family and life, from weight loss to struggling with diet its fantastic guys :-)

    Am currently on my diet right now, my levels are at 442 which is ok for me…Aiming to get to 300 simply because of health reasons…Send me a wee message on here with ur name which u use for Facebook and ur location so i can find you and i'll confirm you and send you a link to the support group, Lovely people on there from all over the world :-) x

    Nicole x

Viewing 7 posts - 1 through 7 (of 7 total)
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