Community Discussion Forum New to Need all the help I can get. Reply To: Need all the help I can get.

Avatar of carrie

 I'm late on this- but i have to say we struggle with diet too. 

We have a one green and one orange vegetable per day rule- so i try to do that for lunch. I don't like to rely too heavily on the low pro foods as i'm worried one day we wont' have them and i wonder how much nutrients they really provide. But i need them because i need the calories! 

A typical diet for my 2 year old – I do a 62.5mg phe for her meals and 31.5mg phe for each of two snacks

And try to aim for 600 calories (because she is getting about 400 through formula) 


One slice of pku raisin bread with butter (14mg of phe and about 120 calories)

One serving of So Deliscious Cultured Coconut Milk (28 mg of phe and about 140 calories i think)

and then her formula (she gets 30mg of formula ) and I add cows milk in to reach my phe for breakfast. 


I still buy babyfood jars for her so i always have a quick veggy on the side when i'm running late

120g of pureed squash (@0.31mg/phe/g =37.2mg of phe and 40 calories i think)

40g sliced fresh mushrooms (@0.72mgphe/g=29mg phe)

Her formula 30mg

(she often get her green and orange veggy at lunch since i cannot guarentee she'll eat it and this way i can try for the rest of the day) 


Usually a high phe veggy with two phe veggies and then sometimes a low pro cracker

Cooked potato (0.88mg/ph/g) 

Broccoli (cooked at 0.83mgph/g)

Canned Corn (1.54mg/ph/g)

canned green beans – french style is her favorite

carrots (cooked or uncooked)

raw cucumber

raw bell pepper slices

zucchini slices

She loves olives and pickles so that helps round out her meal

Her formula 30mg + 10mg- usually i give the 30mg about an hour before supper and then the 10mg after supper. 

For her two snacks I try to get her fruit in


apple sauce


raspberries (higher phe but strawberries are lower phe) 



watermelon (low phe)

other melons


dried cranberries/dried blueberries/raisins

and then I try to do some low pro baking to get the calories in . We make a loaf of low pro bannan bread or low pro apple muffins and then try to get her to have one piece per day. 

On days when we are short calories sometimes i add a tsp of coconut oil to her formula 

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