School age children with PKU

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School age children with PKU

• Facilitated by Maryam Naziri, RD, LDN
• Metabolic Dietitian
• Childrens Memorial Hospital
• Chicago, IL

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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

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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.

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Why should we focus on transitions
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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

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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).

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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.

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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).

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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)

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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.

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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

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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

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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

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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

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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

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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?

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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?

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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?

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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

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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 hamburger1 camburger 51mg of
  PHE1 camburger bun 13mg of PHE1 tomato slice
  1 lettuce leaf 6mg of PHE1 tbsp of Catsup 7mg of
  PHE ½ cup applesauce 6 mgTotal PHE 83mg

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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)

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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!

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Questions?