Part of life with PKU is having to take regular blood samples to test for phenylalanine levels, similar to diabetics drawing to test their blood sugar. Testing for phenylalanine, however, requires the blood to be sent to a lab for testing versus having an at home machine to do the reading for you.
Technologies for home blood tests have really improved in recent years to where pricking my finger is virtually painless. Nowadays, I use a small penlet that quickly pricks me with a sterile needle allowing for blood to be drawn. When I was younger, this process was much more complicated, and a little traumatic- for all parties involved!
Before the penlet, we were provided with sterile needles by the hospital (which resemble blades in my memory) that would have to be used by hand to break the skin and draw blood. My poor parents. One of them would have to hold me as the other held my hand and pricked me with the needle to do the monthly blood test. I didn't make it easy for them either!
I remember the testing supplies (and needles) were kept in a Lord and Taylor box- the ones that used to have the rose on them. I remember this so clearly because roses have thorns, and I associated that with having my blood drawn. Whenever I saw this box come out I would make a run for it and hide in the apartment. Under beds, behind the curtains- I think I exhausted every hiding place you could think of.
I can only imagine how hard this must have been for my parents. It was such a blessing when a friend of ours introduced us to the penlet. This device is roughly the size and shape of a thick sharpie marker and loads the sterile needle inside. There is a spring contraption which allows the needle to penetrate the skin quickly, reducing the sensation.
Needless to say, we made the switch to this new device! It was much quicker and less painful than before. As newer versions of the device have come out the pain threshold diminished as well. This technology also allowed me to start drawing my own blood as I got older. I could not imagine having to stick myself with a needle by hand.
Now if only someone could invent an at home testing machine, that would be great!
The blood draws are by far the worst part of this short time we've been dealing with PKU. It's so differcult seeing out 3 month old, laying there crying while getting her blood drawn each and every week. The woman at the lab though is really nice and we make sure to see the same person each time.
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