Community Discussion Forum Adults and PKU side effects of not staying on the diet Reply To: side effects of not staying on the diet

Avatar of Tracie

Hi Fiona, nHave u tried any low-pro foods for PKUers? nThey have Pasta,rice,and even bread. nYou can get some great recipes.
BreaMarie is very Knowledable on the low-pro foods. nKuvan is a pill i take it 5 times a day.
It is made by BioMarin. nKuvan functions like BH14 that naturally occurs in the body. nBH14 is like PHA(Phenylalnine) nit helps break down the Amino acid PHE found in many foods,and into other needed chemicals in your body.
I recommend to ask your PKU Dr. nPlus right now BioMarin is giving out 45 day samples to see PKUer responds to it.
Normally (i guess in my case)it allows me to eat more PHE products,but of course no meat.
Your Dr. can call BioMarin in SanFransico,Ca. nand request to try it out on you. nAll it takes is a call,and over the phone script,and they deliver right to your door.
As for myself i am allowed 60 grams of protein in a day.Which is alot. nMy body breaks down some PHE they (Drs.) nJust don’t know how much.
Let me know if i can get you any info on it. nContact #’s anything i can do to help.
Take care,and talk to you soon, nTracie-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