So last week was a bit of a downer, so let's talk about how we as PKUers can make sure we are keeping our diet under control: BLOOD TESTS.
You may be aware of how people with diabetes check their blood sugar with a blood test to make sure their levels are in the correct range. If their levels are too high or too low, it can affect the way they function. This is very similar to PKU blood tests, but we have blood tests that check the phenylalanine levels in our blood, and if our levels are too high or too low, it can affect the way we function.
Here are some symptoms that I experience when my levels are off:
Memory loss
Mood Swings
Hand Tremors
Agitation
Fatigue
Lack of focus
PKU is all neurological, so it affects everything to do with your brain.
Unlike diabetics, we don't have at home tests that we can take and then instantly get results. We haven't had the awareness to raise funding for something like this, not yet anyways. So what do we do?
Ever since I was diagnosed I would get blood tests. The younger I was, the more often I would have to get blood tests to make sure I had good blood levels as my brain developed. When I was really little, my mum would take me down to Children's Hospital in Vancouver and I would get my blood taken once a week. Shout out to my mum for making that drive and sacrificing her time for that!
Once I got into elementary school, I would go to our local blood lab every two weeks to get my blood tested. I was a regular in there! I would go sit down, all the nurses would know my name and my story, and then after I was done, I'd go into the back room and grab myself a sticker. You also need to fast for these tests so my mum would make sure to bring my formula (we'll talk about formula next week), so that I could chug it back right after my blood was taken because I was always so HUNGRY right after my test. The good thing about blood tests for school, is that if it made me late, my teachers knew I got blood tests and they would let me off the hook, especially if I had my sticker on my shirt as proof.
There are finger blood tests you could do at home, although the results don't happen at home. You give your finger a prick, fill up four circles on a sheet, and mail it into the hospital and get your results a couple weeks later. (This is still how it is today!) But, for some reason my mum and I could never get blood out of my finger, and that's why I went to the local blood lab for so long.
Once I hit high school, my mum decided I couldn't be late for class anymore (boo) so we tried the at home finger "pokes" again. I had this old needle pen, that you could adjust the deepness level of how far in the needle went into your finger (gross) and that never worked. But they came out with a new needle that instead of it going deep into your finger, it came out, made a little slice, and went back in. GREAT SUCCESS! No more running up and down the stairs and doing pushups first thing in the morning to try and get my blood flowing, I could just run my finger under warm water, poke, mail my blood and get on with my day.
So this is what I do now. Although, my dietician is probably reading this and judging me based on how infrequently I'm doing them. It's supposed to be once a month but I just forget okay?!?!!?
Anyways, my levels are supposed to be between 2 and 6. When my mum was in charge of my diet, she would do everything she could to make sure that I was exactly at 4. And she was good at it. I had perfect levels my whole life. Until I moved out. Once I was in charge of my own diet, it was so much harder to be good with my food, eat the right amount, keep on top of my levels and do frequent blood tests. This is just one of the struggles that people growing up with PKU have.
There are different factors that can cause levels to rise or fall without the patient doing anything to make this happen. The main reason is when people get sick, this tends to affect their levels.
OKAY. That was a long one. And the more I write, the more there seems to be to unpack!
Looking forward to seeing you next week!
