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Keir – School Notes

Keir – School Notes. I have PKU (Phenylketonuria) My condition cannot be cured and I will have it all my life My medication is my diet. My liver cannot breakdown protein so I have to be on 'Low Protein Diet ' and have supplements everyday I cannot have Aspartame

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Keir – School Notes

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  1. Keir – School Notes • I have PKU (Phenylketonuria) • My condition cannot be cured and I will have it all my life • My medication is my diet. • My liver cannot breakdown protein so I have to be on 'Low Protein Diet' and have supplements everyday • I cannot have Aspartame • I have regular blood test to check my phe levels

  2. MY PKU DIET • 3 Main meals a day must contain all three below. It is important that I have these together and in the order below: • 1. Supplement (PKU GEL) • Mix PKU Gel powder with 30ml of cold water. I have to finish all of it. I need help making my gel and scraping the last bits of it out of the bowl • 2. Weighed amount of Protein • I have 3.5 exchanges (3.5 grams of protein) and have to eat it all. I need help weighing my protein food and checking I that I have eaten all of it and not dropped it on the floor. Anything dropped must be saved so my parents can weigh it and replace it later that day. • 3. Free Food • I don't have to finish or have it. It is my top up food and energy food. See Free Food List

  3. SNACK • I have 'free food' for snack • vegetable sticks (cucumber, carrot, pepper) • My special low protein food • Fruit (banana, apple, grapes, citrus fruits, melon, berries) • Dried fruit such as raisins, apricots- only one portion (size of my palm) in one day. Dried is concentrated and higher in protein. • I can have water, my low-protein milk (SnoPro) • I can have squash but must check that has no aspartame or 'Contains a Source of Phenylalanine' • Majority of sweets and sugar free drinks have aspartame, I must not have them. • No chocolate or nuts. These are too high in protein

  4. PROTEIN • I must have 10g (exchanges) protein a day split into three meals. This might change as I grow, my parents will let you know. Usually I have • Breakfast:3 exchanges • Lunch 3.5 exchanges • Dinner 3.5 exchanges • My protein needs to be weighed very carefully. For example 4g of cheese is 1 exchange and it is not very much. • It must be an amount that I can easily manage. For example 80g of boiled potato is 1 exchange 3 exchanges of boiled potato will be too much for me so can be mixed in with cheese or peas to make up a managable portion. • I don't eat ever meat, fish or eggs.

  5. FREE FOOD • I can have my free food without having to weigh them and can eat as little or as much as I like. • Free Foods are: • my low protein specialised foods that come with prescription such as pasta, rice, cake, bread, biscuits etc. My parents order them monthly from our GP • Most Fruit and vegetables*, sugar and fat, water, fruit juice *I must not have anything with ASPARTEME. Please check the labels.

  6. How do I calculate my exchanges • on labelled food: • 100 (divided by)/ the amount of protein in 100g • For example: • Baked Beans contains 5g of protein in 100g • 100/5 = 20g of beans = 1 exchange • I keep more information on Keir's blog: www.pkuandmyfamily.com

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