Community Discussion Forum New to My sister has PKU and i need some info.

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  • #9520
    Avatar of Brad

    Hi There

    My younger sister was diagnosed with PKU very late so she has a severe case with bad brain damage. She is almost 20 now and as her brother i want the best for her, is there any literature anyone has that i can read up on, to see if there is anything that we as a family are not doing already to help her?

    Avatar of carrie

     I've not read very much about late diagnosis- but to keep them on diet should improve mood, attitude and be more comfortable for her. Can I ask where you are from? I've heard of a girl diagnosed here at age 12 last year and she seems to be doing well on diet. 

    Avatar of Taylor

      PKU is hard to deal with. you can only have a certain amount of protein everyday, I can only have 6 grams of protein each day. If you go over that limit you will become extremely emotional. Mood swings, Deppresion, etc. We have remakes of your food(not as good).  I am sorry about that. um.. also when your brain is still devolping and you have to much protein you would become mentally retared.    I hope this helps!  

    Avatar of Brad

    Thank you both for your posts it helps that there are people with advise, We are from Johannesburg in South Africa. She was not tested at birth so my parents only picked it up very late and in turn has caused terrible brain damage. We keep her on a strict diet, and give her all the support possible when it comes to her mood swings. I have just been doing some research into any information i can find that could possibly make her life the best that it can be, she is a 20 year old girl that can only write the letter P of her name, yet she has taught me the biggest lessons i will ever learn in my life, im a good person because of her. She has done this for me i want to do anything in my power for her and other children that are like her.

    Avatar of Stuart

    Hey Brad,

    I am glad to see you taking an interest in your sisters well being. Can you please tell me what treatment she is getting now. Treatment even if treated late is extremely imprortant. I dont know what things are like in South Africa but I know things are not the best when it comes to treatment in France as my mom is french. Anyway dont know how much help I can be but if I can help I will. Treatment and meds (PKU meds not typical meds) are the key.

Viewing 5 posts - 1 through 5 (of 5 total)
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