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My baby boy was diagnosed with PKU from his heel prick test at 1 week old.  We are coping well with feeding him on his calculated combination of normal and special formula but will be starting weaning in the coming months.  Has anybody else had experience of this and if so, do you have any hints or tips?  Thank you in advance.


  • I realise that this condition is very rare so will come back and post my experience in a few months time after we have started weaning to try and offer advice to anyone else who may be affected in the future x

  • Hi Newmum30. Sorry that no one here has experience of raising a child with PKU to share with you.

    But thanks SO MUCH for offering to come back and post about your experience with weaning your boy – we're sure it'll be such a help in the future to anyone else whose baby has PKU.

    Sounds like you're doing a great job, by the way!

  • Thank you that's very kind of you to say.  We have a beautifully natured boy who has made it very far!

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