PKU.com Community Discussion Forum Parent support Anyone know about Kuvan? Reply To: Anyone know about Kuvan?

#7259
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shadyshirl
Member

Hey there – in the UK and a million miles away from some of you guys – but have a little lady of 11yrs who is really (for the first time in her life) struggling with her diet – she is still on maxamum and this is adding over 300 calories to a normal childs diet – she thinks she is fat – and although she is far from obesce she is a little bigger than she should be – she has been offered an alternative drink but can not stomach it – makes her feel sick (she says) I know it sounds like I dont belive what she tells me but all the drinks she has been given taste (to me)foul – is this me or do I change it ??? – also – just read about Kuvan – and the side effects – is this a good thing or not
I know its my first time in here but hey n11 yrs on I could do with a helpin hand – and yes my little lady has a name – Holly she is fab – larger than life – a fantastic sense of humour (which she gets from her dad) but when she gets down – she is inconsolable for hrs and she is only 11 !!
any help tips or chat would be lovely

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