PKU.com Community Discussion Forum Parent support advice to parents

Viewing 14 posts - 1 through 14 (of 14 total)
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  • #4626
    Avatar of craig
    craigu
    Member

    To all parents and people with PKU. I am a 27 year old male who has lived with the CONDITION all my life. I lived the first 16 years of my life on a full strict diet, which I strongly advise to everyone. At 16 it was the happiest day to that day as I came off my diet and I lived, what I call a normal life.
    I was told at 5 years old that I would come off my diet at 7 years old, which to be honest I am glad I did not. I do not agree that, PKU is for life but must stress I am not a qualified medic in any way, but just someone who talks from experience. nFrom my experience I want people to know that you should not worry about this condition, as if it is managed and controlled for your childhood, there is no reason why you cannot in later life come off your diet as I did. nParents who read this please understand that children in there early teens will find it very hard with PKU, purely becuase at that age they are growing/developing and having a low protein diet will not feed there appetite.
    I am not the oldest by a long way but I am the oldest, or was the oldest in Humbberside with PKU, and when I was born this was a very new condition. People knew little about this and to be honest we still do not know anything like we should.
    I am saying this because I know what it feels like and I know if managed properley there could be a bright future for a lot of PKU’s. Again I must stress this is only my opinion through experience not medical fact.

    #4629
    Avatar of Noelle
    mnbamonte
    Member

    Thank you so much for your posting. I have a one year old son that has PKU and hearing people who have it, and have a positive outlook make me feel very happy.

    #4630
    Avatar of craig
    craigu
    Member

    Your quite welcome for that. I am not sure if it is possible but please have a look at my profile as I am proud of my achievements in life and do not always think that PKU is such a terrible thing. I do believe it is possible for pku children to go on and have a great education as my understanding is that pku effects your learning if it is not managed. I have a degree as my highest level in education and have worked with the police for 9 years now. I have developed a great lot of experience in management and currently work as a manager with in a car rental company. nThis is living proof that even though we are quite rightly nervous about PKU and its effects, there are positives and please all I ask is for people to believe that they can achieve the same I have or even do better. If managed carefully everyone with PKU can create their own success.

    #4636
    Avatar of Breanna
    BreaMarie91
    Member

    Craigu, I parctically totally agree with you and partically disagree, although this is just my opinion and I totally respect your opinion. My name’s Breanna and I’m 15, I think the PKU diet should be for life, but this is just what I believe. I guess the reason I feel that way is because when ate things I shouldn’t when I was younger it gave me massive headache. I know that might not be the same for others with PKU but that is how it is for me. Then again, maybe that is just because (like my dietian says) I have the a more serious case of PKU and my body can’t handle as many phes as some others with PKU (this is the same with my younger sister). Resulting in us being able to have alot of phes per day. So I do disagree, and I do think PKU should be for life, but then again I don’t know because this is just from my experience.
    On the other hand when you are basically saying that people with PKU can do anything that others can do I totally AGREE! You are proof of that and I hope to be proof of that, I’m just as smart (if not smarter ) then some others at my school. And I plan to go to college to get a degree in nursing (kind of as a ‘back up’ degree) and then eventaully I want to become a peditrian and specialize in genetic disorders (mainly pku ). You are defintally right, people with PKU are basically normal people…we’re just on a diet. I’m proud to say I’m almost a straight A student and I also take dance lessons and help teach classes. I think alot of people, including you, are good examples of people who can live successfully with PKU. nBreanna

    #4637
    Avatar of Breanna
    BreaMarie91
    Member

    Opps, I meant to say that me and my sister are NOT allowed alot of phes. Sorry

    #4638
    Avatar of Bernard [BJ]
    bjmachowicz
    Participant

    I have an 18 year old son that is terrible with his pku, he only drinks his formula when he wants to and eats all the wrong foods his levels stay okay but they could be better and he is really overweight and really fights me over this expecially wanting him to join a gym and doing the machines he loves to swim but needs more i would really like for him to talk to another PKU person to see if it would help him at all! Can anyone out there help? Thank you Mrs. Machowicz

    #4639
    Avatar of craig
    craigu
    Member

    Thanks for your reply and good luck with your career. I just want to say I respect your opinion but I must say after spending 11 years off my diet I feel a lot healthier and happier then when I was on.
    I am always been told by “experts” that it should be for life but I strongly disagree as I base this on what I know and feel.
    I also have the more serious case of PKU and lived on a strict diet for 16 years. I was told that the reason we have to be on a strict diet for so long (16 Years) is because that is the length of time it takes for the brain to fully develop into adult size. After this time I understand that learning problems are low risk purely because our brains are no longer growing. This is what I believe and lets be honest noone in the world as far as I know really knows what is going to happen when we get older. Yes there maybe a risk to me but I can only go on what I feel, and comparing to when I was on my diet I feel a hundred times better and I have been a lot more successful.

    #4640
    Avatar of craig
    craigu
    Member

    Mrs Machowicz I would be happy to help as much as I can.

    #4641
    Avatar of Breanna
    BreaMarie91
    Member

    Mrs. Machowicz, My name’s Breanna and I’m 15 and have CPKU. I know I’m a few years younger then your son but if you want, then feel free to contact me. nBreanna

    #4647

    breanna and average, I think it would be awsome if he could talk to both of you having pku, he really has only met the people at the pku picnics and that was a few years ago. And the people he did meet live very far away! so he is a member on this site his name is bj machowicz so if you can maybe get his attention on how important it is for the formula and foods maybe it will help us out! Mrs Machowicz

    #4648
    Avatar of Breanna
    BreaMarie91
    Member

    Mrs Machowicz, Okay, I think I’ve actually already spoken to your son once or twice on the site. That’s basically the same for me, really the only times I’ve met people with PKU in person is my younger sister and some others at picnics and cookie exchanges, but we stopped going when I turned about 8 and so I lost contact with them. We went back 2 years ago when I was in 8th grade but I felt ackward since I didn’t know anyone and last years got cancelled but I’ll probably go this year. nBreanna

    #4707

    craigu do you have mild or classical pku???

    #9742
    Avatar of Jenny
    Jenny547
    Member

     I am partially on diet, as I am a vegetarian, but not on any low-pro foods. I am 32 and still find myself to be far more focused and emotionally stable when I take my PKU coolers (properly; with food). I get pretty messed up without. My specialist wants me on Low-pro foods too, but I'm not sure I can cope with eating more cardboard and less food. Despite that, I would not recommend coming off diet to anyone!

    #9743
    Avatar of Anna
    Annaha
    Member

    My dougter used PKU 2 mix and PKU 2 prima from Milupa and now we have more than 10 tins left. It is originally packed and closed, 2-500 g cans in packaging. For us it is now useless, it may helps to you. I can leave it for $ 90. Let me know soon if you are interested. hudakova.anna@seznam.cz

Viewing 14 posts - 1 through 14 (of 14 total)
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