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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 2-3 years age.	Discuss the self-management timeline. Continue to discuss PKU diagnosis and management during clinic visits	Self-Management Timeline* Curriculum materials
Child will be introduced to the concept of "yes" and "no" foods at meals, in the grocery store, etc. Family, including older siblings, will talk about "yes" and "no" foods. Child will be able to identify "yes" and "no" foods.	Discuss the concept of "yes" and "no" foods with parents and child at clinic visit and follow-up phone calls.	Games That Teach* Chef Lo-Phe’s Phenominal Cookbook*   Food models, pictures of foods
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 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. Address issues around formula acceptance: taste, flavor, when to change Emphasize importance of weighing formula: Allows child to participate in own management.	Food record sheets Low Protein Foods List Article: Living with PKU--dealing with "formula battles", National PKU News 1993;5:2:4-5
Parents will understand typical toddler eating behaviors and will understand family and peer influences on food habits. Family will include child in cooking experiences.	Discuss typical toddler eating behaviors: Food "strikes" or "jags" Changes in food preferences and appetite Refusal of food indicates increasing independence Recommend books about parenting practices.	Child of Mine and How to Get Your Kid to Eat… by Ellyn Satter. Chef Lo-Phe’s Phenominal Cookbook* List of books about parenting practices
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 Lancets Monitoring Blood Phenylalanine Levels at Home* Article: Tips for dealing with blood draws at different ages, National PKU News 1991;3:1:4-5
Parents will track serum phenylalanine levels and make prescribed changes to formula and food pattern.	Report serum phenylalanine levels to family within 24 hours of report from lab. 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, length, and head circumference at initial clinic visit and follow-up 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 pyschometric testing by age 3 years.	Arrange for administration of tests, according to neuropsychological testing protocol.	Psychologist Birth to 3 Center referral, if needed Neuropsychological Testing FAQ*

* Educational materials developed by the University of Washington PKU Clinic.

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