Older Pku

Older Pku

Avatar of Joyce

Older Pku

July 8, 2011 in Uncategorized

I am a sister/caregiver of an older (55yo) PKU male. He was 1 1/2 yo when he was detected. i was wondering if anyone else has or knows of anyone else in this age range and what they are dealing with. My brother is fairly high functioning. He works at Walmart and can take fairly good care of himself. As a matter of fact he stays home while I work and can use a bus system to get home from work when he doesn't ride his bike. He is a great joy to our family, he has encouraged my granddaughter to pursue a career in special education. She has worked with the handicapped since she was 12, now 18 and going to college in August. Any insight anyone can give, I'd appreciate it.

2 Reviews of Older Pku

  1. Registered: Apr 13, 2010

    Posts: 0

    plant city, Florida

    my husbands uncle has CPKU! hes aroung 50 tho i dont know his excat age, he was the first person that was tested in the state of Florida for PKU! he was diagnosed at 11mths old! hes very high fuctioning as well! fishes, hunts, drives, so over all does pretty much what he wants! he dose have a lil bit of a delay but other than that he gives me hope for my little Maverick who also has CPKU! good luck! is the man you care for on diet at all?

  2. Registered: Apr 16, 2016

    Posts: 0

    No Location

    Shona said on May 2, 2016

    Hi im 56 this yeari was 2yrs old when I was discovered with pku I was the first person birn in belfast with this condition as it was so rare then from being born to up to 2yrs old no one could tell my mother what was wrong with me she knew something wasnt right with me but she was persistant and finally they told her I had pku and was put right on diet I was put on minaphen thats the equivalent to baby milk then as I got older and up to a certain age it was cymogran then the grey tubs of amino acids mixed with diluting juice(yuk) when my sister was born 4 years from I was born she got the guthrie test she also had pku and she got put straight on diet I was taken.off diet when I was 13 then back on when I was 36 when I was having my twins I was then alliwed iff diet but to be honest I wish id have been kept on diet although now at my age I have been on pku coolers since january and so far so good …hope thats a bit of help to you if you need to chat further feel free

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