Community Discussion Forum Adults and PKU Pku moms Reply To: Pku moms


Hi my name is Lisa. I am new to this website thing. I am 21 years old, from Tuckerton, New Jersey. I have been on a diet since birth. Not too strick as far as drinking the milk or being on it very frim since I was like 15, but I am 21 years old, not looking into getting pregnant, but wanna be prepared just incase. My levels I take every other Monday and as of now stands at a 13.4 I am seeing everyone on here with levels over 100 why is that? Can anyone tell me? I feel like maybe I’m doing good, but maybe there is something I’m misunderstanding. I am looking to meet people with the same thing I have maybe I will be understand things. I am looking to have a baby within the next couple of months to a year, but wanna make sure I am really healthy and have a healthy baby. My doctor who is located in Camden, NJ at the Cooper Hospital says, that between a 2-6 is perfect and you must be on the diet consistantly for 3 months before planning a pregnancy. I don’t drink the powder milk it all and my levels are 13. Can someone who has had a child tell me how they over came this?? I’m really scared for my future of ever having a child.

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