PKU It’s in the blood! Part 2 ..

“In one sense, on a practical level, blood tests were no big deal. I was not squeamish about pricking you or drawing blood and you co-operated. The click pen wasn’t painful. Sometimes it was hard to get enough blood. The difficulty was the delay in getting the result meant it was hard to tie up cause and effect. You were never on the low side.  We weighed and measured and so didn’t think we could do any more. Levels used to be between 500-700 µmol/L. The metabolic doctor was ok about it so long as you didn’t go over 700. I don’t think we understood the link between having all your drinks and being able to keep the levels down.

We noticed once when you were very ill with flu that your level went up to 1200. But again, by the time we got results you were getting better so it was all rather academic. I don’t think we understood the link between high levels and behaviour. Generally, your behaviour was not a problem. As in you didn’t have strops. I think it was more about you being very tired and unable to think straight. Going to bed was the default treatment to save your energy.  When doing the DLA forms there was a lot of emphasis on doing blood tests.  But that was to show what treatment was needed before it was accepted that the diet was treatment. You were always on 3grams of protein a day and we didn’t alter that no matter what the results were. The blood tests just confirmed you still had PKU and we had to stick to the diet not relax in any way. To be honest I don’t really remember much when you were little apart from “drink your drink” and we could never get you to drink enough!”

My father, Luke had this to share:

“Because I was a nurse, I put a lot of pressure on myself to do right for you and to know what I was talking about. Doing your blood test as a baby wasn’t too difficult because it was on the heel and just became a routine part of being a good parent but it was mostly just unpleasant. I had thought I done well, managing for you to be born at home with no medical intervention but then I realised that having a baby with PKU meant it was exactly the opposite and I would always have to do medical intervention, I have to stick a needle in you every week and feed you chemicals! The blood test was a weekly reminder of that.

Waiting for the result was even worse, it was like a test if we were good enough parents being given a score as to whether we failed or passed, whether we’d made you ill and possibly giving you some irreversible brain damage or if we were doing okay.

Did your behaviour change dependent on your levels?  I have absolutely no idea you were really fun kid, you were emotional, moody, incredibly happy, sometimes angry.  I was worried that the blood levels would somehow affect you but honestly I would say you can’t live your life worrying like that every child is different and changes week to week.