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


In Indiana Medicaid is required to pay for the formula, but they’re trying to get out of it!!! so the dieticain is doing what she can, and since Tanner only needs one bottle of phenex a day, a can generally lasts about a week. There is still no way to tell exactly how much phe she’ll be allowed and she’s 4 1/2 months, so there really is no answer to your question. Babies are very closely monitored (which is y u have to do so many heel sticks) because they grow so much during the first 6 months of life, then they tend to stop growing so rapidly.
I’ve found that the smaller needles work best when you do heel sticks…are you doing them yourself? Also, if you can have someone hold the baby in an upright position, it helps the blood flow easier to the lower half of their body. Now, Tanner just sits in the corner of the couch while I do it, she usually doesn’t even cry!! But trust me, that comes with time!!!
Good luck!!

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