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School age children with PKU


Children's Memorial Hospital. Chicago, IL. Over View. Transitions: what does it mean? ... PHE content of each meal was calculated. 10 day rotating menu was ... – PowerPoint PPT presentation

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Title: School age children with PKU

School age children with PKU
  • Facilitated by Maryam Naziri, RD, LDN
  • Metabolic Dietitian
  • Childrens Memorial Hospital
  • Chicago, IL

Over View
  • Transitions what does it mean?
  • Utilizing transition tools in PKU care.
  • School lunch
  • What does the law say?
  • Working with the school and the clinic
  • What is the best plan for school lunches?
  • Packing a lunch or doing hot lunch
  • To bring or not to bring formula
  • Examples of working with the schools
  • Sample school lunch menus

Transitions When and how to start?
  • Transition is a process.
  • There are 3 major transition stages reaching
    school age, adolescence and adulthood.
  • The transition process is about change new
    responsibilities, release of other
  • During day to day life, it may be challenging to
    think about transitions and the future, but being
    aware of them can help you move through these
    stages more smoothly.

Why should we focus on transitions
What are appropriate transitions?
  • Age 4-7
  • Assign your child chores appropriate for his/her
    ability level (tasks around the house).
  • Encourage decision-making skills by offering
  • Teach consequences of your childs behaviors and
  • Begin asking What do you want to do when you
    grow up?
  • Begin teaching your child self-care skills
    normal skills and those related to his/her
    special health care

How to integrate transition tools in PKU care
  • Age 4-7
  • Can start with simple things like making sure
    that they know the name of their medical formula.
  • Encourage them to get involved i.e., mixing the
    powder and water together.
  • Begin to learn to count foods how many
  • Begin to use scale how much
  • Use red light/green light food system or PKU
  • Learn how to deal with other childrens curiosity
    about PKU (i.e. how to talk to their

Appropriate transitions
  • Age 7-11
  • Begin helping your child interact directly with
    doctors, nurses, therapists and teachers.
  • Assess your childs perception and basic
    knowledge of his/her special health care need.
    Build on their understanding.
  • Continue teaching your child normal self-care
    skills as well as skills related to his/her
    special health care need
  • Take your child shopping whenever possible so
    he/she can help in choices.
  • Let your child choose how to spend some or all of
    his/her allowance.

How to integrate transition tools in PKU care
  • 7-10 years
  • As they get older they can help measure out the
    medical formula.
  • In clinic they should be encouraged to interact
    with the medical team i.e., asking questions.
  • Prepare formula with decreasing supervision
  • Choose after school snack
  • Learn to pack school lunch
  • Begin to list foods on food record
  • Begin weighing food regularly on scale
  • 10-12 years
  • Begin to prepare and consume formula
    independently each day (with parental monitoring)
  • Prepare simple entrees independently (i.e., low
    pro cheese sandwich)
  • Know what blood levels are ideal (by using their
    own phe level results as examples).

Reinforcement is key
  • Review material that is discussed in clinic i.e.,
  • - Importance of medical formula
  • - When they are younger the explanation would
    be to help them grow do well with school work
  • - As they get older can elaborate a bit more
    - provides protein for growth
  • - creates strong muscles
  • - has vitamins to stay healthy
  • - gives energy for the body
  • - to protect the brain
  • - appropriate phe level range (2-6)

  • Established in 1946
  • Provides federal support to schools that serve
    USDA approved meals to their students
  • NSLP sponsors are required to offer free and
    reduced-price lunches to eligible children.
  • Program is available to any public school,
    intermediate unit, charter school, area
    vocational technical or career technology school,
    public residential child care institution, and
    tax exempt non-public school or residential child
    care institution may apply to be an NSLP sponsor.

Requirements for those with Special Dietary Needs
  • Rehabilitation Act of 1973
  • Section 504 mandates no exclusion if program
    receives federal funds
  • The Individuals with Disabilities Education Act
    (IDEA) of 1990
  • Americans with Disabilities Act of 1990

1991 USDA Accommodating Children with Special
Dietary Needs
  • Further federal law requires
  • Substitutions in foods for those with
    disabilities under a section in the USDAs
    nondiscrimination regulation
  • Also states that schools cannot charge more for
    these special meals
  • State Agencies Administering the Child Nutrition
  • http//

Working with the school and clinic
  • Start process early, preferably before school
  • Get to know the foodservice personnel
  • Educating school personnel about PKU
  • Signed letter from authorized health provider
  • Cambrooke Foods has a SLP
  • packet available

School Lunch
  • What is the best plan for school lunches?
  • Every child family is unique and have to decide
    what works best for them
  • Bringing lunch from home
  • Know what the child is consuming
  • Child can bring back unfinished lunch to assess
  • Buying Lunch
  • Some want to have the opportunity to buy lunch
  • makes them feel independent and self-assured
  • Feel included with buying their lunch

Bringing lunch from home
  • Involve your child in planning and preparing and
    packing the lunches.
  • Provide some choices and let them decide what to
  • Write down lunch menu ideas and rotate menus
  • Keep lunch-making supplies together
  • lunch bags, sandwich bags, juice, small storage
  • Pack lunches the night before to avoid the
    morning rush

Buying School Lunch
  • Decide with your child when to buy lunch from
  • Talk with your clinic Dietitian school lunch
  • Talk with them about your childs special diet
  • Come up with a specific plan for your child
  • Is there flexibility in the school lunch program?
  • What is the best way to provide low protein foods
  • Can or will portion sizes be measured?
  • Who will supervise the school lunch?
  • Will your child be on an honor system, or will
    school personnel be involved?

What is the best plan for school lunches?
  • Review the school lunch menu to plan ahead
  • Adjust the menu to be low protein
  • each week circle low phe items, e.g., fruit,
  • Substitute high PHE items
  • Pizza day do low protein pizza etc.
  • Bring lunch and buy side items
  • veggies, French fries, tater tots etc
  • How do you address this in your family?

To bring or not to bring formula
  • Some choose not to bring formula to school.
  • Consume 1/3 of formula in the morning before
    school if not consuming during the day.
  • After school activities, recommend drinking
    formula at school
  • Options to bring formula to school
  • Have formula in the nurses office
  • Bring formula in lunch
  • Drink it during class if drinks are allowed in
    the classroom
  • Put formula in fun sports bottles
  • Involve child to decide when formula will be
  • Agree with the plan as a family
  • How do you address this in your family?

Example of working with the School
  • 11 yr old male with classical PKU
  • Goal for school lunch
  • 75-85 mg of PHE per meal 8 oz of Phenex 2
  • Daily low protein school lunch implemented
  • RD coordinated menu with school and family
  • Specific PHE content of each meal was calculated
  • 10 day rotating menu was created
  • School food service director coordinated with
    Cambrooke Foods and Lils Dietary Specialty Shop
    to order foods
  • School was very accommodating

Sample Menus
  • Goal of 75-85 mg of PHE per meal 8 oz of
    Phenex 2 formula
  • Low protein Cheese Pizza (44mg of PHE) ½ cup of
    cooked carrots (14mg of PHE) 1tbsp
    butter/margarine (6mg of PHE) ½ cup of peaches
    (18mg of PHE) Total PHE 82mg
  • Low Protein Mac and Cheese (30mg of PHE) ½ cup
    of green beans (34mg of PHE) ½ tbsp of
    butter/margarine (3mg of PHE) 20 green grapes
    (14mg of PHE) Total PHE 81mg
  • Low protein hamburger 1 camburger 51mg of
    PHE 1 camburger bun 13mg of PHE 1 tomato slice
    1 lettuce leaf 6mg of PHE 1 tbsp of Catsup 7mg of
    PHE ½ cup applesauce 6 mg Total PHE 83mg

Sample Menus
  • Low protein Tortilla Wrap (1 tortilla 10 mg PHE)
  • 1 slice of low protein American Cheese (29mg PHE)
  • ¼ cup shredded Iceburg lettuce (6mg PHE)
  • 2 tbsp of salsa (16mg PHE)
  • ½ cup of peaches (18mg PHE)
  • Total PHE 79mg
  • Low protein Grilled cheese
  • 2 slices of low protein bread (18mg PHE)
  • 1TBSP butter for bread (6mg PHE)
  • 1 slice of American cheese (29mg PHE)
  • 20 green grapes (14mg PHE)
  • ½ cup raw baby carrots (18mg PHE)
  • Total PHE 85mg
  • Low Protein Mostaccioli
  • 1 cup of cooked low protein penne pasta (11mg of
  • ¼ cup of marinara sauce (32mg of PHE)
  • ½ cup of green beans (34mg of PHE)

In Summary
  • Know there are programs in place to support your
    childs dietary needs.
  • Plan ahead for school lunches.
  • Get clinic and school personnel involved
  • Begin the transition process as your child is
    developmentally ready so that they can continue
    to succeed with diet for life!