Treatment Guidelines: Children & Adolescents


Objective 1: Provide family with understanding of PKU and skills for effective PKU management

Objective Methods Materials

Parents will become familiar with the self management timeline and identify tasks during the 3-8 years of age

Discuss the self-management timeline.

Continue to discuss PKU diagnosis and management during clinic visits; include child in discussions.

Self-Management Timeline

Child will begin to measure portion sizes: count foods, use scale.

Family will continue to discuss "yes" and "no" foods. Child will be able to describe "yes" and "no" foods.

Discuss introducing portion sizes with parents during clinic visit

Curriculum materials


Parents will understand the influence of peers and will teach child how to deal with other children's curiosity about PKU and diet.

Discuss the influence of peers and appropriate actions parents can take during clinic visit and follow-up phone calls.

You and PKU activity

Other books

Parents will discuss appropriate decision-making with child, e.g., "Cheese is a 'no' food, so we'll put jelly on your sandwich."

Older children (6-8 years) will demonstrate appropriate food choices.

Discuss effective modeling with family.

Provide examples of age-appropriate decisions.

Frog and Toad Together

Little Bear The Cookie

Monster and the Cookie

Tree Tales of Oliver Pig

Family will communicate child's needs to school personnel.

Discuss information to be presented to school with family. Include information about making appropriate choices/substitutions, trading foods.

A Teacher's Guide to PKU

acrobat reader logo School Lunch Considerations

acrobat reader logo Sample School Lunch Strategy

Objective 2: Establish and maintain an appropriate formula prescription and food pattern

Parents will continue to provide child with prescribed formula and food pattern and to record food and formula intake.

Parents will continue to emphasize "formula first" and communicate that formula intake is not negotiable.

Discuss child's intake and family's formula preparation methods during clinic visits and telephone consultations.

Review food records with family.

Food record sheets

Low Protein Foods List by VE Schuett

Family will include child in food selection, preparation, and record keeping.

Discuss including child in food-related activities and decisions with parents during clinic visits and telephone consultations.

Child of Mine and
How to Get Your Kid to Eat
, by Ellyn Satter

Chef Lophe's Phe-Nominal Cookbook

Objective 3: Maintain serum phenylalanine levels between 1-6 mg/dL

Serum phenylalanine and tyrosine will be measured as prescribed:

Monthly blood draw when serum phe levels are between 1-6 mg/dL and tyr levels are between 0.8-1.8 mg/dL

Weekly blood draw when serum phe levels are <1 or >6 mg/dL

Continue to provide family with resources to obtain serum phenylalanine level:

  • Standing order at local clinic/hospital or with PMD
  • Home visit from public health nurse

Filter papers


acrobat reader logo Monitoring Blood Phenylalanine Levels at Home

Article: Tips for dealing with blood draws at different ages, National PKU News 1991;3:1:4-5

Family will track serum phenylalanine levels and make prescribed changes to formula and food pattern.

Report serum phenylalanine levels to child and family within 24 hours of report from lab. Include follow-up letter directly to child.

As needed:

  • Make adjustments to formula prescription
  • Request for follow-up blood draw

Chart (notebook) for family to track serum phe levels and growth

Follow-up note or postcard to family documenting phe level, changes to formula prescription.

Objective 4: Assure proper growth and development

Child will grow appropriately.

Measure weight and height at clinic visits. Plot growth on appropriate CDC charts.

Evaluate estimated energy and protein intake.

Evaluate estimated micronutrient intake annually.

CDC growth charts

Food Records

Child will receive psychometric testing.

Arrange for administration of tests, according to neuropsychological testing guidelines


acrobat reader logo Neuropsychological Testing FAQ