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Recommended Assessment Schedule

 

The patient with PKU should be monitored regularly depending upon age. The following monitoring guidelines have been developed for medical/nutritional management of children with PKU:

Birth to 1 Year:

  • Serum phenylalanine and tyrosine levels (including report to family and appropriate adjustment of formula) – according to schedule established by "New Infant Protocol," then once per month when levels are stable.
  • RD contacts (nutritional assessment, including measurement of length, weight, head circumference, and review of diet and blood levels, and counseling) –once per month.
  • Hemoglobin or hematocrit measurement – once, at 6 months of age.
  • PKU Clinic visit – once per month.

1 - 3 Years:

  • Serum phenylalanine and tyrosine levels (including report to family and appropriate adjustment of formula and phenylalanine from food) – once per month; mid-month levels when serum phenylalanine is less than 1 mg/dL or greater than 6 mg/dL.
  • RD contacts (nutritional assessment, including measurement of length, weight, head circumference, and review of diet and blood levels, and counseling) – once per month.
  • Hemoglobin or hematocrit measurement – once per year.
  • Albumin/prealbumin measurement – once every 1-2 years.
  • PKU Clinic visit – once per month.
  • Psychometric assessment – one evaluation at age 3, according to neuropsychological testing protocol.

3 - 5 Years:

  • Serum phenylalanine and tyrosine levels (including report to family and appropriate adjustment of formula and phenylalanine from food) – once per month; mid-month levels when serum phenylalanine is less than 1 mg/dL or greater than 6 mg/dL.
  • RD contacts (nutritional assessment, including measurement of height and weight, review of diet and blood levels, and counseling) – once per month.
  • Hemoglobin or hematocrit measurement – once per year.
  • Albumin/prealbumin measurement – once every 1-2 years.
  • PKU Clinic visit – once per month.
  • Psychometric assessment – one evaluation every 3 years, according to neuropsychological testing protocol.

5 Years and older:

  • Serum phenylalanine and tyrosine levels (including report to family and appropriate adjustment of formula and phenylalanine from food) – once per month; mid-month levels when serum phenylalanine is less than 1 mg/dL or greater than 6 mg/dL.
  • RD contacts (nutritional assessment, including measurement of height and weight, review of diet and blood levels, and counseling) – once per month.
  • Hemoglobin or hematocrit measurement – once per year.
  • Albumin/prealbumin measurement – once every 1-2 years.
  • PKU Clinic visit – once per month.
  • Psychometric assessment – one evaluation every 3 years, according to neuropsychological testing protocol.

     

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