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

Viewing 6 posts - 1 through 6 (of 6 total)
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  • #9536
     My name is Edward, I am the father of a very handsome and very smart lil PKU boy. When he was born his mother had her boyfriend signed the birth certificate and disapeared for almost three years. I finally got her in court, she was using drugs and neglecting my son’s low protien diet and was not reporting to the state’s lab with blood samples so his phee levels could be monitored, and the state gave my son to me. So here I am, a brand new father after 3 years, and I am swamped with phone calls, appointments, and educational meetings. I understand the information, but I am struggling to feed this child like he truelly needs to eat. His phee levels are good, but if I was to describe his diet, which in a way reflects my own, would be a low protien conveinence food diet. I am looking for ideas, recipies, information, anything that people with experience can share with me so that I may learn to live the lifestyle of a father that has a son with PKU. Don’t hesitate to help me help my little boy. Thank you.

    Avatar of Simon

    Hi Edward,

    First of all let me say how great it is to see you step up and look after your boy like that, you should be real proud of yourself im sure it was an emotional journey..

    Where abouts in the world are you living? If I was you, I would try and get in touch with a local Dieatician and they would be able to help you sort out a meal plan, and give you loads of nice recipies..

    What are your sons recommended phe levels? How many Exchanges is he currently on? If you post this information up, it would make suggesting foods a little more easy.

    My partner is currently on 17 exchanges (she is pregnant), therefore she has 17g of protein to play with each day(1g of protein would be 1exchange), which she feels is quite alot.. more than she would normaly have.  An example of a dinner meal for her would be:

    2 Sausages (6 exchanges)

    2Bacon (6exchanges)

    225g potato (5Exchanges)

    If you want to private mail me your email address I would be more than happy to send you a copy of the food lists we recieve from our doctor which will give you all the different types of food and how many exchanges they use.

    Here in the UK we get free Health care.  So it may not be as easy for you to do what I do.  We get alot of PKU foods and drinks through Prescription from our Doctor.  There is many different types of cake mix, biscuits and choc bars available through companies such as SHS International.  Again we get these through our free health care system so im not sure of the cost issue.

    I Wish you all the best and hope both you and your lil man stay happy and healthy..

    Best of luck .. Simon

    Avatar of Tanya

    Hi Edward,

    We are in Canada. We don't measure Phe Exchanges, the same as other areas of the world. We instead are allowed a certain number of Protein. I dont look at Phe specifically. (Some areas do) Jacob is allowed 6.5 grams of protein in addition to his formula.

    What is your sons tolerance? How do you measure (grams protein or Phe content). Do you have access to foods? (In Ontario, our coverage is awesome when compared to other areas) I have utilized many of those foods to make convience foods.

    Example : 

    Using Low Pro Instant Potatoes, and Southwest burger meat, and corn I can make a bunch of lil shepards pies for the freezer.

    Or the same Southwest Burger meat, with aprotein noodles, lo pro cheese and ragu original sauce, I make a bunch of lil lasagnas.

    I freeze these in lil containers so they are available when we want or need them in a hurry.

    Let me know if I can help :)


    Avatar of Breanna

    Can I ask how much phe your son is allowed (or protein/exchanges depending on what you are counting)? In any case fruits and vegetables are always wonderful options! Most vegetables can be steamed, boiled, fried, baked, and so on to give them a different texture and taste or simply eaten raw. You could also check out which is a website filled with wonderful low protein recipes that two mothers of PKU children created. I have not tried to recipes myself, but I have heard very good things about them.

    Other great resources that might come in handy include:,,,,, and Also if you have Facebook an search PKU or Phenylketonuria there are several online support groups there.

    Hope this helps!

    Breanna 20 PKU

    Avatar of Stephanie

     My life is hectic, I can't imagine what it would be like as a single parent.

    I usually do a lot of cooking on the weekends.

    I make waffles (Cambrooke quikmix is great for this) and freeze them. The recipe is on the Cambrooke website.

    I also will make a couple loafs of bread ( I use Dietary specialties bread machine mix). Pre slice the bread, freeze one and make the other one into personal pizzas, then freeze. Personal pizzas I just top the sliced bread with sauce and lp cheese. 

    Glutino makes a pretzel that is good and low enough in protien I let my daughter have them. Its in a blue package. The pretzel sticks are good – the twist are very hard. My daughter will dip those in salsa or cheese dip (dietary specialites cheese sause) ranch or LP peanut butter, or even cake icing.

    Cheese sauce is great, my daughter puts in on anything, carrots, greenbeans, noodles, pretzels, dips bread in it. 

    Just a few ideas – hope it helps

    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 

Viewing 6 posts - 1 through 6 (of 6 total)
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