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

#7078
Avatar of Breanna
BreaMarie91
Member

I’m actually on Kuvan. It has helped a lot because before Kuvan I was allowed 300 mg of phe and I’m not up to 1030 mg! The only problem is now I’m finding it hard to get all that phe in because honestly I like my low protein foods better. And I’m only getting 650mg of phe through food and the other 380 is coming from milk mixed into my formula. Lol, so I can’t even get in double what I was allowed before.
What would you like to know about Kuvan? I’ll help anyway I can. nBre

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