To monitor blood phenylalanine of a pku patient we need to do regular blood test levels , much like a diabetic. However we do not have a monitoring device . Even as an adult I still use newborn screening cards. Upon wqking while fasting ,I take my blood from my finger and place it on this card . The card dries for 4 hours before being placed in a special cover and is then mailed for analysis m it takes 10 days to get my results back. If my levels are high or if I was pregnant and my levels where high that is much to long and would have aide effects . My levels are then assessed by a clinical dietitian. If they are high we lower my intake for a few days and re test m if they are to low we increase what I eat . As an adult I do monthly checks but can do as often as once a week if I am trying to be diligent or am making changes to my diet . Not having a device to test st hone is so frustrating . When I am sick my levels can go up , if I am working out a lot my levels also go up. Yherr are many reasons levels can change and I dream for a device to be able to monitor the fluxuations.

When cole and I decide to have kids and I get pregnant, I will need to restrict my diet even more so and closely monitor my levels and test them every 2 days and have them courier to the hospital so I can get results with in 24 hours. What ever my levels are in my body are double in the uterus and can have serious life threatening impacts on a fetus .

This is my newborn screening kit. I buy the lancets in bulk myself but the cards come supplied from the hospital when my formula is delivered. I go through alot of stamps lol