PKU.com Community Discussion Forum New to PKU.com I’m back Reply To: I’m back

#7618
Avatar of Tracie
Tracie_PKU
Member

Hey there,
I was so excited to see you respond .
Thank you
I am Borderline PKU so iam allowed 60 grams of
protien a day.Just not from any meat or chicken
or anything good.LOL
I am a veggie,and eat regular cheese.
Which is fortunate.
I can also eat tofu as well,but over all i just count my protein intake.
I have been on Phenex 2,but now my Dr. wants me to start Kuvan.
I am a little nervous i don’t take pills well.
I’ looking at about 40 to 60 a day.
I get nervous cause i feel full off of just formula,and i tend not to eat.
Which is not good.
So i try to do my best.

I also have a team of Drs. for my Anorexia,but overall doin good.

Hey where do you live at?
I am in Asotin Wa. town of 1100, and mostly children.
I am the only one local with PKU.
So i tend to have to educate the DRs. as well as my Dietition.LOL

Anyways talk to you soon.
Take care,
Friends,
Tracie-PKU

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