The walls were covered with a new set of pictures. As we sat there, waiting to be called in for our appointment, I stared at them and wondered about the children who’d drawn them. What was their story? What led them to need help here? What is the collective noun for Mr Men?
It was a review meeting with my daughter’s neuro-psychiatrist. The professionally professorial professor who, in August last year, diagnosed my daughter with a mood disorder.* (*My computer has just tried to autocorrect this to a ‘moog’ disorder, which is a satisfyingly funky substitute).
At the time our family was bewitched, bothered and bewildered by our daughter’s cyclical batches of agitated evenings and sleepless nights, followed by angry outbursts at school, rounded off with a zonked out zombie ending. Rinse and repeat every three weeks or so.
It took a while to get to the right person, and it took a long, hot, afternoon building the most exhaustive and exhausting medical case history of my girl’s life, but the Prof got a handle on the situation. A big, red, emergency handle, labelled STOP. He told us that our girl was exhibiting behaviour on the spectrum of bipolar disorder (something which is more prevalent in adolescents and young adults with Prader-Willi Syndrome than in the general population). He thought a mood stabilising drug would potentially help. After he consulted with some big cheeses in the PWS research world, he became more convinced this would be the correct course of action to take. So did we.
Here we are, nine months later. Pills are still being popped. The highs have been capped, and the lows have been lessened. Our daughter is still our daughter, not the unrecognisable, vexing, perplexing, intermittent stranger in our midst. The drugs are stabilisers, not sedatives, so there are still the usual wobbles and waves that come with childhood, teenagerdom and Prader-Williness. But they're gusts, not whirlwinds. She’s her. She’s ours. She’s herself.
The meeting with the Professor went well. He spoke kindly, carefully, and respectfully to her. My girl was shy, fiddled with her hands and was hesitant with her replies, but told him she was happy. She meant it.
My daughter’s wobbly bike ride through life hit some serious potholes earlier this year.
We’d had bent spokes before, and the odd puncture, but nothing like this.
She started suffering bouts of destabilising sleeplessness. In the worst throes of it, she span out of control, with jittery and agitated long nights of freewheeling, followed by days where pedalling was too much effort.
The medical investigations started. An MRI ruled out anything like swelling on the brain. An EEG, the results of which took an age to turn up, has finally confirmed that she isn’t suffering seizures.
In the meantime, a neuro-psychiatrist diagnosed the problem as a mood disorder on the spectrum of bi-polar. Lamotrigine, a mood-stabiliser, was prescribed.
Now, two months later, the bike is back on track. It still won’t travel in a straight line, but then it never did. Its rider is happy again. Fitting the stabilisers has brought our daughter back to us: with all her funny little ways, her shy smiles, her meandering chats and occasionally clunky gear changes.
She’ll never pass the drugs tests for the Tour de France, though.
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.
