PKU.com Community Discussion Forum Parent support Any body from the uk?

Viewing 9 posts - 1 through 9 (of 9 total)
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  • #9753

     Hi just wondering if there's any one on here who's from the uk? It's be great to speak to someone who understands the exchanges and how things are described in the uk lol xx

    #9761
    Avatar of christine
    prince
    Member

    i'm a mum of a 40 year old.My son Michael was born in 1972 and was diagnosed when he had the heel blood test.Apart from being a bit slow he's managed to marry and have a son of his own.In those days children were able to come off the diet when they reached 16 or 18 which Michael more or less did.During his20's or 30's he was advised to go back on to diet but has not been able to get back on it properly.Recently he has been admitted to hospital because of high levels so now understands that he has to follow it properly .cannot help you with info on exchanges because things have changed over the years but hope this makes you feel ok for the future Michael is a lovely caring person .i don't know how many pku people are in the uk now.

    #9762

     Aww im glad to hear he is doing well and had grown up happy and healthy. Sorry to hear he was in hospital and fighting his levels :( I think things have changed slightly. Oliver is only 18 months old, and he was diagnosed at the heel prick test. He seems to be hitting all his targets so I think as far as his brain is concerned he's okay. Obviously time will tell ! We were advised now a days to keep ollie on his diet for the rest of his life but if when he's older he decides not to then it's his choice. Xx

    #9763
    Avatar of petrina
    batwoman
    Member

    Hiya i am from Offaly in Ireland but i live in Belfast,Northern Ireland.. I am an adult classical pku-er and have been on the diet all my life.I have 2 sisters with P.KU and my brother is non P.K.U.

    Was your son diagnosed at the start Prince?

    I was lucky enough to be under the care of an amazing doctor in Temple Street childrens hospital in Dublin who insisted that diet-for-life was the way to go and said as much at all the conferences at the time when lots of countries were taking children off the diet.

    Having said that i do find it hard to stick 100% to the diet especially when i was in university!!!

    I am married with two healthy happy kids.

    Oliversmummy on growing up we were probably the healthiest kids in the town as we got excellent vitamins and minerals every day and with the diet pku kids are bright as buttons!! I would strongly advise you tell Oliver to diet for life… but with the new advances who knows, perhaps the diet will get easier or some medical breakthrough will occur!!??

    #9764
    Avatar of steph
    steph1987
    Member

    im steph im pku im 25 now came off my diet at 18 :) and live a normal happy life :)  my brother doesnt have pku. i run my own business with my partner .  i the same as bat woman was probably one of the most healthiest too eating all them veggies and fruits lol.

    #9765
    Avatar of steph
    steph1987
    Member

    i used to call exchanges portions. what is it you wanted to know ill help as much as i can i used to be on 10 portions until i was 15. i had a very up n down level all my child hood i have non of the enzyme to break down protien. so pretty much the most sever case. my family all wish it was my brother who got it and not me cause doesnt effect  child carrying with a male. lol. but hey ho will cross that bridge when i get there :) 

    #9766

     Oh no really!? I didn't know it could affect you carrying a chip :( that must be so hard and I'm really sorry to hear that! I wish you the best of luck :D

    i really struggle with food to take out with me,, like my friends would take a packed linch consisting of sandwich, crisps, biscuits etc for the babies but I struggle on what to pack ollie. He always seems to be eating jam but ties! Haha and he hates his food :( 

    How did you find having PKU through your teen years? I worry ollie will find it hard, is there any advice you think you'd give to a teen with PKU? … Obv I have a while till he's a teen yet haha xx

    #9769
    Avatar of Nikolaos
    NikosDim
    Member

     Hi everyone

    My name is Nick and I have PKU too. I am from Greece but 1.5 years ago I moved to UK to do my MSc and now I work in an IT company. 

    My story is that my parents got informed at the time I was born that I had PKU so since then I am in a diet and I will be in the rest of my life (unless someone finds a cure). I am 25 now so I am used to the diet and I have no problems with it. My doctors were saying that if you do strict diet while you grow up (while your brain grows up) then you can have a looser diet when you become 18. This is really hard but it is worthy. I have two sisters and one brother and only my little sister has PKU too. So I was the first one.

     Oliversmummy92 keeping a teen on diet is really hard. I remember myself breaking my diet every now and then when I was a teen. But it is something that can and must be done. I thank my parents for doing a good job on this. I was wondering if in UK children with PKU has to take special nutrition supplements because back in Greece the doctors still gives us nutrition supplements like this http://www.vitaflo.co.uk/products/metabolic-disorders/protein-metabolism/phenylketonuria/pku-cooler-system/

    #9770
    Avatar of yvette
    evee
    Member
    hey im from the UK i live in lincoln x
Viewing 9 posts - 1 through 9 (of 9 total)
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