Infant Treatment Protocol: age 6-12 months - PKU Clinic

Infant Treatment Protocol: age 6-12 months

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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 self-management timeline and identify tasks during the 6-12 months age.	Discuss the self-managment 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.	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 to 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 increased 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 feeding 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 Sample menus for 15, 30, and 45 mg phe from food. Food record sheets. Self-Management Timeline* List of low protein foods and suppliers Look-Alike Foods* 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 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.
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.	Administer: Bayley Scales of Infant Development II MacArthur Communicative Development Inventory Share results with family. Provide family with necessary referrals, if needed.	Psychologist Birth to 3 Center referral

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

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