Download Hand Outs B 1 - University of Wisconsin–Madison

Definitions for Parents-complex concepts in simple language
for you to use with your school-aged children
Protein=a long chain made up of amino acids. Protein is found in food. Protein
is also in the body in muscles and enzymes.
Amino Acid=a small unit that makes up protein
Phenylalanine=one of 20 amino acids. Called “phe” for short.
Tyrosine=another amino acid. In someone who does not have PKU, phe gets
changed into tyrosine.
PKU=Phenylketonuria=a genetic disorder in which the body cannot
change phe in the usual way.
Enzyme=a substance that makes chemical changes in the body
Here’s the usual way the body uses protein and phe.
Food with protein in it is eaten. The protein is broken apart into amino acids.
Phe is one of the amino acids in food protein. The body absorbs the amino acids
into the blood. The body uses the amino acids from the food protein, including
phe, to make new body proteins and muscles. Any leftover phe, that is, any phe
not needed for making body proteins or muscles, is changed into another amino
acid called tyrosine. This change happens in the liver.
If you have PKU, here’s how the body uses protein and phe.
Food with protein in it is eaten.
(This is the same as usual.)
The protein is broken apart into amino acids. (This is the same as usual.)
The body absorbs the amino acids.
(This is the same as usual.)
The body uses the amino acids from the food protein, including phe, to make
new body proteins and muscles.
(This is the same as usual.)
Here’s the difference: With PKU, the body cannot change any leftover phe
into tyrosine, another amino acid. The enzyme that does this is not working.
Leftover phe builds up in the blood and is harmful. It is especially harmful to the
brain.
The diet for PKU=provides the right amount of phe so there is not a lot of
leftover phe to build up in the blood. The diet also provides all the protein,
energy, and other nutrients for your body to grow and work at its best.
Know to Grow
Handout B1-a
Family Letter
© Copyright 1997 University of Wisconsin-Madison
Read The Story of Me
and Phe again.
Think up two questions
to send in with your
next blood sample.
Questions?
1. ______________________________
2. ______________________________
Know to Grow
Handout B1-b
© Copyright 1997 University of Wisconsin-Madison
Know to Grow
Dear parents,
Your child participated in the Know to Grow program today. Today, and over the next
2-3 years, your child will participate in six special teaching sessions to learn more about
PKU, their bodies, the diet and how to take on some responsibility for their health. The
emphasis is on some responsibility at this stage in your child’s life. The Know to Grow
program has separate teaching sessions for three other age groups of children with PKU
ages 5 to 18.
We are excited to be partners with you in teaching and enabling your child to ultimately
manage the PKU treatment independently. We need your partnership, as we will be
seeing your child only once or twice a year whereas you have nearly daily opportunities
to teach. To help you reinforce what was taught in clinic and adapt new skills to your
family situation, you will receive a guide after each session highlighting what has been
emphasized and some follow-up activities to do at home. We are, of course, available by
phone to answer questions or clarify any issues that may arise in the teaching sessions.
We welcome feedback about anything in the program that was especially meaningful to
your child or that led to confusion or uncertainty.
You will find your role changing as your child grows. Currently, you are the primary diet
manager. As your child enters the middle school years you will find yourself in more of
a supervisor role. As graduation from high school approaches you will become more of a
consultant, available to lend a hand or clarify an issue for a young adult who is managing
things quite capably. But we are getting way ahead of ourselves. The adventure towards
independence is continuing. We look forward to being a part of that.
Specifically, children in third to fifth grade will be introduced to all of the various aspects
of managing the diet. To keep this from being too overwhelming, these concepts and
skills will be applied to breakfast and snacks only. For example, in learning how to use
the gram scale, we will practice with breakfast cereals. The approach to learning about
phe exchanges (or counting mg of phe) and planning meals will again be applied just to
breakfast and snacks. You can, of course, adapt these approaches to your own family
situation.
We feel privileged to be able to work with your family in this way.
Sincerely,
The PKU Clinic Staff
Know to Grow
 University of Wisconsin-Madison 1998
Handout B1-c
Introductory Letter for Parents