PKU.com Community Discussion Forum New to PKU.com Another newbie here Reply To: Another newbie here

#9641
Avatar of Natasha
pkuparent2
Member

First off,….Congratulations! You guys have been through a lot and I'm sorry to learn of the lose of your first baby.

I have read the wonderful responses above and I don't think I could add anything else to them! Dominic will do just fine with the concerned parents he has. Our son's is almost 3. His level at birth was 200+. He now tolerates 15 grams of protein and drinks 16 oz of formula spread out throughout the day. I know we are using a different scale of numbers than you, but if you get the conversion, that might give you a bit of an idea. We were told for a PKU diet, his is very liberal. We do weekly blood work, and Liam's latest trick now is to say that he, needs to do my blood to put off bedtime!!!!  Nice try :) So,…bloodwork is actually not a big deal for him at all. We mail it to a different province and then they email us his phe level each week.

I remember my sister (a pediatrician) saying when I was at first devastated over this, that once you see him crawl, smile, walk, know his personality… all of this won't seem like such a big deal. Remember that!!!  You'll have a busy little boy that you won't be able to keep up with!

Tasha

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