Community Discussion Forum Parent support I’m new to all of this. Reply To: I’m new to all of this.

Avatar of Eugene

I was born with moderate PKU. My levels were pretty low and after 3 years old I was off diet for 35 years. Now I have possible brain damage because over the years my levels rose to 1800 moles/liter. Which is 60 mg/dl on the old scale. It was never that high when I was a teen. Watch the levels for life. Doctor are not sure. My doctor has never seen anyone like me or even heard of anyone like me. I have constant dizziness and problems concentrating including driving a car. NEVER let your guard down.

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