Community Discussion Forum New to NEED SOME HELP WITH UNDERSTANDING

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  • #6647

    I’m looking for some imformation…
    My upstairs neighbour’s little girl Caite has just been diagnosed with PKU at 1 week old. Her mum Natasha is still a bit numb from finding out and I would so love to be able to give her some encouragement but I know so little about this condition.
    Could anyone let me know where to look and what to say to help her.
    Cait is her firts child and so this is just adding to all the other stresses that come with the arrival of a new born. She’s the most perfect little thing (Caite that is!) and I really want to keep Natasha feeling possitive about the whole experience.
    Many thanks for being there

    Avatar of Sarah

    Hi nEaston was my first baby too. It was hard at first to hear that something was “wrong”. Easton is almost two now and doing very well. Now Easton’s dietary needs are second nature to my husband and I. I think if Easton had been our second or third child it would have been a little more difficult to make the needed changes to our dietary lifestyle. nYou can tell your friend that though they make have to make some unplanned changes to what they eat as a family, their baby will be happy and healthy. There are lots of great tasting choices. And thankfully they were able to find this out when she was only a week old rather than months later.

    Avatar of Breanna

    Hey, I think it is absolutely wonderful that you want to help your friend out! Basically Caite will have to remain on a special low protein (more specifically low phenylalanine) diet for the rest of her life, drink a specail metabolic formula to get nutrients she is missing because she isn’t getting a lot of protein and do regular blood tests to monitor the amount of phe in her blood…I hope that made some sense! That was just my very quick way to describe PKU. Then again who knows, there are drugs coming out that might hopefully liberalize the diet and allow Caite and other people with PKU to be on a more relaxed diet. Things change every year (for the better of course).
    Your friends baby will be perfectly fine! Like Sarah said, Easton is perfectly fine and I have PKU as well and I’m doing great to! I guess the most you can do is be there for her when she needs it! I was my mothers third child and her first with PKU. She has always told me it was hard for her to teach my older sister and brother about my PKU when she was learning at the same time. Maybe you could show her this website so that she could get involved her as well. nBre 16 CPKU

    Avatar of Marie

    I can completely understand your friends feelings with the PKU diagnosis. After my son was diagnosed I had a lot of emotional days. He is 7 months old now and his PKU has become a way of life for us. There are definitely inconveniences with it but the most impotant thing to rmember is that PKU is treatable with a special diet. People are always amazed that my son has anything wrong with him because he is such a happy baby and he looks completely normal. A good website to look at is the childrens PKU network ( they have a packet of information that they will send to new parents. Another good site is I hope this information helps your friend. nMarie

    Avatar of

    Well My name is jack I got PKU and my 18 year old borther too! nBut I don’t relly know much about PKU I’m just on this site to talk to other people with PKU or people who know some one with PKU!

    Avatar of Donna

    my 1st daughter has pku she is now 20years old with a daughter of her own,you just have to learn as you go, :

Viewing 6 posts - 1 through 6 (of 6 total)
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