Community Discussion Forum Parent support Do you have to order special foods? Reply To: Do you have to order special foods?

Avatar of Breanna

I know what you mean about having someone so close to you with PKU. I actually live litertally down the street from a women who is about 40 and has PKU and there is also a 18 month baby who my mom has helped alittle. I think they live about 10 minutes away from us.
As for the food it depends where you live, I know here in Wisconsin they cover some foods like low protein pastas and formula and a few other things so we don’t have to buy to much. We just go down to childrens hospital and pick it up. I guess it also depends on how much phe your allowed, because if the women you meet has a child who is allowed alot of phe then it would be alot easier for her child to just live with things at the grocery that are low in phe. But it is possible, fruits, veggies, cereals, fruit snacks and some junk foods (depending on what it is) are usually okay. Me and my sister actually don’t eat to much low protein foods, just pastas and sandwichs and that is about it.
Finally, about the blood tests. I wish I could say it will get easier but I can’t. I don’t know from personal experience but I know my mom still isn’t 100% happy with doing blood tests (even after 15 years!). nBreanna

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