People with phenylketonuria (PKU) must continually have their blood monitored to measure the amount of phenylalanine. Different doctors and different hospital may do this differently and ow often this testing is done can vary as well. Most doctors recommend monitoring the blood every week or every two weeks. After the age of 12, every two weeks to one a month may be sufficient. A blood sample can be taken from the heel in infants and toddlers or from the fingertip in older children and adults. Parents can learn how to take a blood sample from their children. This may be difficult at first, but it eventually becomes routine.
Parents of children with PKU and people with the disorder should work with their PKU medical team so they can work out a system for monitoring blood phenylalanine levels. Parents should consider working with their children so it will easier one day for the children to take over their own monitoring.
Other Questions About Phenylketonuria
- Will my child with phenylketonuria go through puberty the same time as their peers?
- Will my child with phenylketonuria be able to live independently?
- Will my child outgrow phenylketonuria?
- Will my child have to use medical food product for phenylketonuria for their entire life or just a period of time?
- Why is phenylketonuria considered an amino acid disorder?
