Monday, 11 January 2016


Example photo of a SPECT scan
Today was just the average kind of Monday. You know, one of those where you catch a train to take your kid down to London to have radioactive dye injected into her. That sort.

Yes, today was the much-anticipated SPECT scan. (I know it sounds like a truncated version of the latest James Bond film - even more so when the section of the hospital it’s taking place in is called ‘nuclear medicine’) but SPECT stands for Single-Photon Emission Computed Tomography. 

It’s a very particular and specialist kind of scan (yeah, I know, you can tell I’m not totally up on the science), and she was having it to try to establish the cause of pain she’s been having in her back. Just before Christmas, doctors were due to operate on my daughter’s spine and remove her titanium rods (inserted during a spinal fusion operation seven years ago), because they believed the metal was pressing on her nerves. But right at the last minute, they changed their minds and decided she should have this scan before any decisions about surgery should take place. This was the genesis of today’s strange adventure. 

At midday, we reported to University College Hospital, London, for her to have the dye injected. The syringe came in a futuristic-looking pod, presumably designed not to break and spill dangerous Hulk-creating gamma rays if dropped. I expected it to be green, or at least to glow, but the dye was disappointingly indistinguishable from the water they injected with it to flush it into her bloodstream.

My daughter, of course, was blasĂ© about the needle. What was causing the persistent, overriding worry today (and there is usually a persistent, overriding worry), was the instruction to report back to the hospital three hours later for the actual scan, having drunk ‘around two pints’ of fluids in the meantime. 

I bunged her a couple of tomato juices and a cup of tea along with her less than 500 calories ‘leggero’ pizza lunch at Pizza Express, then insisted she take a sip of a drink every time she played a card in our after-dinner game of Top Trumps at a cafĂ© near the hospital. All the while she was fretting: concerned she’d not drunk enough, and then anxious about having drunk too much. It didn’t help that she had no clue whatsoever about how big a pint was, despite my repeated attempts to impart my expert knowledge about the quantity of this particular measurement of liquid. At least she was allowed to go to the loo, because if bladder control had been added to the equation, we both might have had some sort of breakdown.

So it was that we returned to the hospital, lightly frazzled, and ready for the fray.

The chap who dealt with her was lovely. He talked her through what was going to happen, and helped get her comfortable, lying her down on a flat stretcher-like bed in front of what I can only inadequately describe as a ‘giant photocopier in the shape of a sideways claw thing’.

And here was where she came into her own. She had her feet tied together, a strap put across her stomach to hold her arms against her side, and she had to lie still for 17 minutes, whilst the camera slowly scanned her up and down, just millimetres from her face. Then after a quick readjustment of her position and the machine’s ‘camera claw’, she had to do the same again.

My girl, my little bundle of anxieties, completed the task perfectly. She didn’t move a muscle for each 17-minute pass. I praised her all the way home on the train. This was in amongst a word for word, worry for worry repeat of the drink shenanigans (she'd been told to imbibe another two pints after the scan, which meant that there were at least 20 people in our train carriage treated to a practical demonstration of just how many times a teenager with Prader-Willi Syndrome can repeat themselves in a 50-minute journey). 

On Friday we see her consultant at the Royal Orthopaedic Hospital in Stanmore. Whether he’ll actually have seen the scan from UCLH before then is another matter. I’m going be persistently pestering his secretary on the phone between now and then to try to convince them that this is a sensible idea. Wish me luck.

Had to pick a Bowie track today, after the sad news of his passing. I’ve gone for New Killer Star. (‘Nuclear’, you see). 


  1. The repeating herself over and over because of anxiety is strikingly smilar with brain injury !

    For the quantities, I had the same difficulties as your daughter.
    Since she seems to thrive in sameness and consistency, I suggest you to give her a specific contenant to teah her the quantity. For example, here, she was told to drink around two pintes of water at mealtime and report three hours later. So, in such situation, you can give to her a glass of one pinte and then, she drinks two glasses of water from the specific glass you gave to her. She can even push the vice by making her write "on day X, at hour Y, drank Z quantity of liquid A", so she can visualize the amount she drank even better.
    This way, it's easier to track how much water she has already drunk, so she is in control, which in turn lessens her anxiety.
    If you use different glasses and tell her that "after this one, it's quantity X", it becomes abstract thinking for her, which seems she struggles with. In turn, you are in complete charge, which doesn't help her anxiety.
    And if you couldn't track easily the amount you were told to drink in a specific amount of time by the hospital, you'd worry too ;-)