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School age children with PKU

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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


1
School age children with PKU
  • Facilitated by Maryam Naziri, RD, LDN
  • Metabolic Dietitian
  • Childrens Memorial Hospital
  • Chicago, IL

2
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

3
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
    responsibilities.
  • 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.

4
Why should we focus on transitions
5
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
    choices.
  • Teach consequences of your childs behaviors and
    choices.
  • 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

6
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
    cards.
  • Learn how to deal with other childrens curiosity
    about PKU (i.e. how to talk to their
    peers/friends).

7
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.

8
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).

9
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)

10
NATIONAL SCHOOL LUNCH PROGRAM (NSLP)
  • 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.

11
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

12
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
    Programs
  • http//www.fns.usda.gov/cnd/Contacts/StateDirector
    y.htm

13
Working with the school and clinic
  • Start process early, preferably before school
    begins
  • Get to know the foodservice personnel
  • Educating school personnel about PKU
  • Signed letter from authorized health provider
  • Cambrooke Foods has a SLP
  • packet available

14
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
    intake
  • Buying Lunch
  • Some want to have the opportunity to buy lunch
  • makes them feel independent and self-assured
  • Feel included with buying their lunch

15
Bringing lunch from home
  • Involve your child in planning and preparing and
    packing the lunches.
  • Provide some choices and let them decide what to
    pack
  • Write down lunch menu ideas and rotate menus
  • Keep lunch-making supplies together
  • lunch bags, sandwich bags, juice, small storage
    containers
  • Pack lunches the night before to avoid the
    morning rush

16
Buying School Lunch
  • Decide with your child when to buy lunch from
    school
  • Talk with your clinic Dietitian school lunch
    personnel
  • Talk with them about your childs special diet
    needs
  • 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?

17
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,
    vegetables
  • 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?

18
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
    drank
  • Agree with the plan as a family
  • How do you address this in your family?

19
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
    formula
  • 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

20
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

21
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
    PHE)
  • ¼ cup of marinara sauce (32mg of PHE)
  • ½ cup of green beans (34mg of PHE)

22
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!

23
Questions?
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