Treatment Guidelines:

Infant Age 6-12 months


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

Objective Methods Materials

Parents will become familiar with self-management timeline and identify tasks during the 6-12 months age

Discuss the self-management timeline

Continue to discuss PKU diagnosis and management during clinic visits

Self-Management Timeline

Sick day protocol


Parents will develop plan for babysitter, other care providers

Discuss plan developed by parents, provide input, as appropriate

acrobat reader logo Babysitter's Guide to PKU

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

Parents will continue to provide infant with prescribed formula and record formula intake

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

Review food records with family

Food record sheets

Parents will be able to add pureed and solid foods based on energy needs and physiologic readiness

Parents will record food intake

Parents will introduce foods with increasing texture, as appropriate

Parents will introduce finger foods, as appropriate

Parents will introduce cup

Discuss introduction of solid foods with parents at clinic visit

  • Typical progression of feeing skills
  • Appropriate foods and portion sizes, including introduction of new foods one at a time, to observe tolerance
  • Appropriate and inappropriate foods
  • Use of low protein products
  • Importance of careful monitoring of intake
  • Calculations of phenylalanine content of foods

Follow-up with family via telephone call one week after introduction of solids

Low Protein Foods List by V E Schuett

Sample menus for 15, 30, and 45 mg phe from food

Food record sheets

Self-Management Timeline

List of low protein foods and suppliers

acrobat reader logo Look-Alike Foods

acrobat reader logo Finger Foods are Fun

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

Parents will track serum phenylalanine levels and make prescribed changes to formula

Report serum phenylalanine levels 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

Infant 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

CDC growth charts

Food Records

If concerns exist, child will receive psychometric testing


  • Bayley Scales of Infant Development
  • MacArthur Communicative Development Inventory

Share results with family

Provide family with necessary referrals, if needed


Birth to 3 Center referral

FAQ About Neuropsychological Testing