PKU.com Community Discussion Forum Parent support New to this website Reply To: New to this website

#7829
Avatar of Ruth
Ruth01
Member

Thanks for both of your replies and advice – you both sound like you really know your stuff!
V interesting to read about Kuvan. Tracie – wow 60 grams of protein sounds an awful lot, probably more than I have in a day! Is that how much you can have after you started taking Kuvan? Do you still have to take protein supplements?
Isla is only having 5g protein per day, This is what we call 5 exchanges in the UK – each exchange here is 1g protein or 50mg Phe. So Isla is on 250mg Phe / day, although she is also allowed things like bananas freely, so I guess she is actually having more like 300mg.
Anyway, I will definitely ask our doctor about Kuvan, but I am fairly sure it is not yet licensed here. Have either of you had any side effects from it?
Isla’s hand shaking is very subtle, so it may just be normal, but I’ll check with our doctor at our next appointment. My friend with PKU says his hands have always been a bit shaky, and the doctors always tell him that’s because of PKU.
Anyway, thanks again so much for your help!
Ruth

Quick Poll
Which of the following best describes you?
Parent/caregiver of an infant with PKU
Parent/caregiver of a child with PKU
Teenager with PKU
Adult with PKU
Grandparent of a child with PKU
Know someone with PKU
Healthcare professional