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

#7435
Avatar of Amber
cjqa2007
Member

Its been awhile since I updated you all on our kuvan experience. We started out being at a tolerance of 500mg phe and blood levels that were 4-5. Right now with the kuvan my son is now up to 1800mg phe (isn’t that amazing) and we are still adding as his last blood draw was a 1.6. My son is 5 and so far has had no side effects thus far. May or may not be something but this is the first time in a long time that we all (the whole family) got sick but not my pkuer. I struggle daily to get enough phe in him without giving him any meat cheese, etc because i really wouldn’t want him to get used to it.

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