It didn’t go particularly well. “Put it on your tongue, don’t chew it, gulp down some of this water, and swallow it,” proved to be an instruction with too many steps. We really should have known better. She started to crunch it, and bits got stuck in her brace. But after some wire brush flossing, and a few gulps of water, we helped her swallow the small yellow tablet. Thankfully, she didn’t seem perturbed by the experience. “We’ll help you do it better tomorrow,” I told her. “OK, Mum,” she nodded, as I tucked her up in bed. She was more interested in looking under her duvet at the luminous wristband she’d been given at the library earlier in the day.
A month ago, I sat in a lecture hall at the International Prader-Willi Syndrome Organisation Conference, listening to PWS expert Professor Tony Holland talked about the prevalence of mental health problems in teenagers and adults with PWS*. I knew then that the odd behaviours my girl had been displaying fitted in with the pattern of some of what he was saying.
So it wasn’t a huge surprise when my daughter’s psychiatrist came up with his diagnosis. Reassuringly, he’s been in touch with Prof Holland (who he has liaised with on numerous PWS cases in the past). And now I’ve got a name, a label. Labels aren’t always welcome, and putting people in a box can box them in, but generally I find if you know what to call it, you’ve got a better chance of dealing with it.
I’ve got it down in black and white in front of me, although there are, of course, 50 shades of grey (no, behave, not that 50 Shades of Grey). My girl’s cyclical bouts of behavioural disturbance, agitation, sleepless nights, and then zombie-like lethargy are being caused by a mood disorder, “broadly falling into the category of bipolar disorder".
So the tablet is a mood stabiliser. To be more precise, it’s lamotrigine, an anticonvulsant medicine which is actually now more commonly used to stabilise mood. Apparently, it’s proved effective in treating episodes of low mood in bipolar and other mood disorders, especially with teenagers. The idea is it will make her feel happier, taking the ‘bottom’ out of the lows. It doesn’t tend to ‘cap’ the highs, though, so it’ll be interesting to see if my girl’s intermittent jittery, sleepless periods will be affected.
We’ll suck it and see. Or rather, we’ll try and get her not to suck it but to swallow it and see.
Video is Dandy Warhols - Horse Pills. Not particularly lyrically appropriate, because they're more like My Little Pony sized pills.
*For anyone interested, the slides from Professor Holland’s conference talk ‘Eating and maladaptive behaviours and mental health: the different challenges when supporting adults with PWS’ are available here on the Prader-Willi Syndrome Association UK website, along with information from a whole range of other talks from the conference. There is LOADS of useful stuff tucked away here.