Friday, 30 August 2013


Two bookends herald the start and the finish of the summer holidays, wrapping the passage of time in a comforting hug.

On the first day of the break my daughter marches me down to the library to join the Summer Reading Scheme. And in the last week, we return, to collect her medal.

This has been going on for several years now, but her pride in achieving the task of reading the allotted amount of books hasn’t diminished; if anything her pleasure seems to increase each year.

Today, she walked up to the desk, with her final sheet of ‘stamps’ clutched close to her chest.

“Eighteen. I’ve read eighteen now, so I’ve finished,” she pronounced, loudly, glancing around to check if passing library users looked suitably impressed.

The shiny, gold-coloured medal was handed over, with the appropriate amount of admiration and praise from the by now familiar ‘Library Lady’, and we threaded it onto her whistle lanyard.

“It’s a shame my brother lost interest, isn’t it?” my daughter mentioned, gleefully, unable to hide her triumphant satisfaction at completing the scheme when he hadn’t.

She’s gone to bed now, gripping the medal tightly in her hand. 

I remember when she was a toddler not strong enough to toddle, rolling about on the floor amidst a pile of picture books. It’s been a long story since then, with plenty of plot twists and cliffhangers. Watching her reading throughout the summer, engrossed in book after book, is always one of my favourite chapters.

Video is Booker T. & The MGs - Time Is Tight

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Friday, 23 August 2013


The EEG was a breeze. More so than trying to spell it out in full: electroencephanlography. (Just imagine if your job was 'electroencephanolographist' and you lived in Llanfairpwllgwyn-gyllgogerychwyrndrobwyll-llantysiliogogogoch. Blimey.)

I’ll stick with the abbreviation: an EEG is a test that records the brain’s electrical activity over a short period of time by sticking multiple electrodes on the scalp. 

My daughter had to have one yesterday, as part of ongoing checks to look at the remote possibility that her bouts of sleeplessness are being caused by small seizures. At this stage, and with the recent diagnosis of a mood disorder being the cause of her uppity ups and downity downs, seizures seem to be unlikely. But it’s good to check.

The nurse was chatty, friendly, and patient with my sleepy girl (who we’d deliberately kept up all hours of the night, having been instructed to do so in the appointment letter). 

She got out a tape measure and marked a series of spots all over my daughters’ head, and with the aid of some sticky goo attached a load of multicoloured wires to her bonce.
It didn’t look quite as space age as I was expecting, in fact, if anything, my girl looked as if she’d had some ill-advised coloured hair extensions put in. All she needed was some henna tattoos and a pierced belly button and she’d have the full gap year student look.

The blinds were pulled, the lights turned off, and then we sat there in silence as she lay on a bed, her head plugged in, and a smile on her face as she was given permission to ‘rest her eyes’.

Her hands rested on her tummy, fiddling with the string of her whistle, which has recently made a reappearance in her life, as a distraction tool to stop her rubbing and picking her fingers. (Talking of fingers, good lord, that photo makes my daughter look as if she has GIANT hands!).  But after a few minutes, she was still. Sleep washed over her. It didn’t do the same to me, honestly, as I sat there watching, in the quiet, with the humming of the fan, and the peace, and the silence, and the slow, hypnotic, ticking of the clock. Not for a minute, no way, no how, did I fall asleep too. Nope. 

It didn’t last long. After 20-30 minutes, the nurse told us that the test was finished. I asked her how it had gone. “Well, we got some good readings: your daughter actually went into REM sleep, which is the kind where you dream. You normally don’t go into it so quickly, but keeping her awake last night meant she went into quite a deep sleep.”

The doctors will be in touch with the results, and also to tell us if they require further tests, possibly timed to coincide with one of my daughter’s self-induced insomniweeks.

Tonight, she had an early night. Something I wish her brother would have considered.  
“What does your brain look like, Mummy?” my boy asked me as I tried to tuck the wriggly bugger into bed.
“Er, quite big and wrinkly."
“Oh. Jo-Jo had a test, didn’t she? I need a test too, you know. In the hospital, too. On my brain. With wires, or we could suck it out with a straw or something, because I DO NOT want to go to sleep. Sleep is boring.” 
“Well, have a lovely, boring night then, little man, because it’s your bedtime.” 
“Yeah. Have we got any straws?”

Video is Green Day - Brain Stew

Thursday, 22 August 2013


Today my daughter had a hospital appointment which required her to be tested whilst sleeping. In order for this to be able to happen, we had strict instructions about her bedtime last night: she wasn’t to have one. Yes, that’s right, our girl who has been having little batches of sleepless nights had to undergo a parentally-induced sleepless night. Well, not entirely sleepless - anything up to, but not more than, four hours of kip was allowed.

So Operation Up All Night was launched. 

Small brother was dispatched to bed at about 8pm (although he seemed to be emulating the aim of the evening by taking forever to reach the land of nod). My daughter’s normal 7pm shower was delayed until 9pm, with a bracing hairwash added in for good measure. The standard hot chocolate was substituted with a fizzy drink (no sugar, of course), and the big old projector screen was rolled down for an All Night Film Night.

We kicked proceedings off with a long ’un - The Hobbit. It was long. Did I say it was long? Because it was. Long. Very long. It was more than an hour before they set off on their bloody adventures, for God’s sake. I wanted to grab hold of the beards of each of those indistinguishable overly-hirsute dwarves, spin them round, and launch them on their way,  but then I remembered that it wasn’t all about me, and that long was good, because we were trying to while away the hours and stave off sleep.

Next up on the film menu was Surf’s Up. Penguins and surfboards Gods! Shia LaBeouf! At least it was just his voice, which is admittedly not quite as annoying as the double whammy of his whiny voice and whiny face when they are employed together to ruin Indiana Jones (along with those stupid aliens and that ridiculous nuclear-proof fridge, but I digress).

By this time, my girl was flagging a little. I sent her dad off to bed, ready to pick up the early shift, and we got out the felt tips and did a bit of drawing. Above, is my daughter’s 1.30am picture of a penguin. Or a hobbit. Or a penguin/hobbit hybrid. I don't know much about art, but I know what I like. 

Then it was back to another film. Her choice for the 2am-3am slot was The Sisterhood Of The Travelling Pants. I’m not sure what she was taking in by this point. I was ready to break, to be honest. Did they ever think to try this stuff on terrorists? Four Best Friends Forever discover the meaning of life, love and friendship through the medium of a pair of magic jeans? Five minutes of that, and Osama Bin Laden would have been sold down the river, I swear, without the need for any orange jumpsuits and wet towels.

By 3am, we were done. Done in. We hit the sack, stuck the coins in the maximum four hour sleep slot, and I sneaked in a little lie-in whilst my husband used Weetabix to lure a sleepy girl out of bed at 7am.

“Mum, I’m tired,” she told me, a little later in the morning, when we were popping to the shop to keep her up and alert (and buy some school uniform whilst we did so). “This is exactly how I feel after when I don’t sleep,” she explained. “I know,” I sympathised, thinking of the little zombie we have on our hands every few weeks, surprised at her sudden self-awareness, and smiling at the higgledy-piggledy construction of the phrase “after when I don’t sleep”.

And so we made it. With the car stereo blasting out loud (and discovering along the way that my four-year-old boy really likes The Dead Kennedys), we got to the hospital, made our way to the neurophysiology department, and sat in the waiting room, ready to be called in for the EEG test. 

I think I'll tell you the rest of it tomorrow. My girl conked out an hour ago, and I think my conk is also outing...

Video is Daft Punk - Get Lucky. Well, we were up all night, nearly.

Tuesday, 20 August 2013


My daughter has just popped her first pill.

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.

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Sunday, 11 August 2013


We need to talk about change.

I don't mean the kind of loose change you find down the back of the sofa, although now that I've mentioned it, I reckon there's enough down there to buy a cheap bottle of rosé with...

No, I'm referring to the unexpected changes that happen in day-to-day life. Changes that are usually only a minor irritation to most people but which can be Very Alarming Indeed to my daughter.

It's physical, I swear. The panic starts in her belly and rises, in what I can vicariously feel is a skin-tightening, cheek-blushing, scalp-tingling, jangle of adrenalin. Sometimes I can talk her down, sometimes I really, really can’t (see previous blog entry: Meltdown).

People with Prader-Willi Syndrome find dealing with unexpected changes very difficult. Anyone with a PWS child will tell you that structured days where things run to plan are easy peasy lemon squeezy. When the running order is switched, and stuff happens to cause you to deviate from the advertised programme, days become eyeball-poppingly stressful.

Let me give you an example: coming back from our holiday on the Isle of Wight, we were booked onto the 11.30am ferry, but we were a little bit early, so a nice Wightlink fellow told us to drive the car into Lane 1. He smiled, unaware of the horror he would potentially unleash with his next sentence: “There’s a chance we can get you on the 11 o’clock one.”

First of all, it was a change. An unexpected change. I knew what was going through my daughter’s mind: “But HOW? WHY? We’ve got a ticket for the 11.30am ferry, so that’s the ferry we’re going on! How could be catch the 11am one, when our ticket DOESN’T SAY SO!” The high changiness factor was exacerbated by the vagueness of his phrasing - “there’s a chance” means “might or might not”, and this, to a PWS person, is an enormously unsettling concept.

My girl began to panic. Her voice started rising, questions began to pour out, and her emotions threatened to break free. Luckily, we managed to lasso her concern and tether it with a bit of nifty explaining and distraction, in particular the trump card of pointing out that it was time for her morning snack.

Well now, we’re planning to change the way we deal with change. There was a talk about behaviour at the International Prader-Willi Syndrome Organisation Conference last month, where the idea of ‘change cards’ were explained.

The concept is simple. You get busy with your Pritt Stick, sticky-backed plastic, felt tips, computer printer, or whatever, and make some little cards, decorated with your child’s favourite TV or cartoon character. You include the word CHANGE. And you keep them about your person, obviously being prepared to soak up the embarrassment of accidentally trying to claim nectar points at the garage with a pink Hello Kitty CHANGE card.

When an unexpected change happens, you acknowledge it, you say to your PWS person that there has been a change that no-one knew would happen, and you give them a card. Here’s the clever bit: you’ve previously agreed with your child that if they get three (or four or five or whatever number you choose) change cards in a week, then they get a reward (such as extra ‘choose time’ at school, a magazine, or a pack of collectable wotsits in their latest endless collection of oojamaflips). So a change is still alarming, unsettling, upsetting, balance-bothering. But it has an upside. The presentation of a CHANGE card is actually a good thing coming out of a bad thing.

Now where are my scissors?

Video is David Bowie - Changes.