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.
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 and...ye 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.
I’ve been carrying something heavy around with me. It’s an unwieldy backpack stuffed with worry. I hooked it over my shoulders at the beginning of the year, and it’s been digging in to me ever since.
At first it was hugely awkward and I was constantly aware of it. But over time, I got used to it - and I didn’t realise how much it was still weighing me down until today, when a complete stranger helped me meticulously sort through its contents and find somewhere else to put them for a while. Damn, it’s good to take a deep breath, stretch out, pull my shoulders back, and stand tall.
I’ve written extensively on this blog about my daughter’s unusual sleep patterns and uncharacteristic behaviours that have been buffeting all our lives in tempestuous cycles in recent months. We’ve had medical tests which have so far revealed no obvious physical cause. We’ve a paediatric referral, which failed to reassure me in any way, and we’ve been lost - for some considerable time - in the error-strewn circle of hell known as NHS admin.
But today, we saw a psychiatrist for the first time. He was a hugely experienced, gentle, gentlemanly man, and I spent three hours encased in a room talking to him on the hottest day of the year. He met my daughter, or rather the spaced-out version of my daughter that appears after a sleepless night, which was probably rather fortuitous timing. He took an exhaustive and exhausting medical history that taxed my memory and stamina. When he told me he was keen to discuss my girl's case with a long-standing friend and colleague who just happens to be one of the most foremost experts on Prader-Willi Syndrome in the UK, and whom I’d watched make a presentation at yesterday’s International PWS Organisation Conference, the relief flooded through me.
We were in the right place, seeing the right person. This occurs less frequently than you think, and oh, how fine it feels when it happens.
There’s a long way to go. The phrase ‘mood disorder’ has been mentioned for the first time. This is in no way a diagnosis, and there is still more medical evidence to gather and examine, but it’s being looked at. A plan will be made, with input from good, knowledgable, experienced people. Something practical is happening. We have momentum. _____
Oh, and dear God, I almost forgot, which would have been unforgiveable. Thanks, Mum, for sitting in that tiny, sweltering waiting room all afternoon. Steve McQueen had a baseball to keep him occupied in The Cooler, and that cissy had it easy - you had to sit in the sweatbox with my PWS daughter (at various points), and my ants-in-his-pants son (at all points and beyond). You know, I really wouldn’t have blamed you if you’d revved off and tried to leap the fence on your Triumph motorbike. Well, Raleigh Shopper, maybe.
Music is Ólafur Arnalds - And They Have Escaped The Weight Of Darkness
I'm not going to say this in a large font, because when I shot my typeface off about it last time my daughter launched into another bout of sleepless nights. So, lean in closer, squint a bit if necessary, and I'll tell you that lately she's been much more settled and has had a couple of weeks of quality slumber.
Each day, when I've gone into her room to pull the curtains open, I've been having a little sing-song, treating her to a burst of that jaunty little song from Singin' In The Rain: "Good mornin', good morning, I've slept the whole night through, Good mornin', good mornin' to you!"
After a couple of days, she started to join in, and then yesterday she quizzed me about which pop star sang it. I told her it was from a famous old musical, and realising I had a DVD of it somewhere, told her we could watch it together later.
The screening began. All was going well, and she was enjoying the fabulous singing and dancing, and then we got to the bit with Gene Kelly, Donald O'Connor, and Debbie Reynolds in the kitchen, about to launch into our what has become our daily musical reveille.
"Here it comes - our song! This is it!" I said, grinning. But the smile didn't stay on my face too long. It began to slide, like a melting mudpack, as I listened to the actual lyrics...
"Good mornin', good mornin', We've talked the whole night through, Good mornin', good mornin' to you. Good mornin', good mornin', It's great to stay up late, Good mornin' good mornin' to you."
I looked at my daughter as I realised the song I'd been singing to her about having a good night's sleep was actually about the complete opposite: staying up all night. Had she noticed?
I turned my head and she looked at me and raised her left eyebrow, in what can only be described as a withering manner.
My daughter has achieved some great things in her 14 years on Planet Earth.
Despite the weak muscles in her legs, she learned to walk. Despite the weak muscles in her mouth, she learned to talk. Despite her constant hunger, she learned how food comes only at particular set times. (I’m not saying she likes this, but she has learned it).
And then there’s her instinctive savviness with technology.
When I was told my daughter had Prader-Willi Syndrome and was likely to have learning difficulties, I never imagined I’d sit and watch her Googling for her favourite TV character on a laptop. Admittedly, compared to other 14-year-olds - who are speedily updating their relationship status and sharing the minutiae of their lives in a flash on Facebleughrk - her keyboard speed is slow. She’ll painstakingly type out the seach terms by copying the title from a DVD or magazine. But she does it. She bloody well does it.
Even more impressively, she can also work our AV system, which is no mean feat, as it consists of more amps, boxes, and remotes than the average Richer Sounds shop.
She asked me a year or so ago how to put on a track through our Sonos system, which accesses the millions of choons on the Spotify streaming service. And she’s pretty adept at it, now. Watching her type in this week’s favourite artist, or the latest NOW album, and studying her face screwing up with concentration as she chooses and controls her own music still gives me a thrill every time.
Well. I say every time. Not any more.
Her intermittent night-time wanderings have sometimes pushed me to the very limits of my patience and understanding. But now it’s gone too far. She’s crossed a line. This morning, at 4.40am, she padded downstairs, and started playing the Mamma Mia soundtrack.
Nowhere in the parenting manual, not even in the small print at the back, does it tell you how to cope with Pierce Brosnan caterwauling through the house in the early hours. Nowhere.
Video is The Phantom Band - The Howling. Well I'm NOT going to post Pierce. I'm suffering from PTYBD - Post Traumatic Yodelling Brosnan Disorder. It's hell. You don't know, you weren't there, man.
In my post Anchor, last week, I wrote about the relative peace and calm we were experiencing. I spoke of how my daughter's night-time jitterybugness seemed to be more under control.
So, of course, tonight looks like being the fifth night in a row of quietly-building, goggle-eyed, wandering-about, hallucinogenic sleeplessness. She's so tired she looks like she's got Parkinson's: her head is nodding, her hands are twitchy, and her eyes are darting about like Eric Bristow on steroids. She has what I have decided to christen 'the half-baked awake shakes'. My beautiful, unrecognisable daughter with the syndrome that means she is always physically hungry, was so exhausted tonight she forgot how to eat.
Next time, maybe I'll keep my mouth shut. You know that saying about tempting fate? I think I must have done a pole dance for the bastard.
Video is Feist - Pine Moon. "Pine moon, spoke too soon..."
My daughter has saddled up once more on the cycle of spiralling sleeplessness, and is pedalling like a mini Lance Armstrong mainlining EPO.
We’ve had three nights so far.
The highlight has been discovering her in the bathroom at 3.30am today, sitting on the toilet, looking blue in the face. I don’t mean looking ill, or cold - I mean actually blue.
She’d been rummaging in her cupboard amongst the few toys and possessions that haven’t been removed and piled up in our bedroom to keep possible distractions at night time to a minimum. She was on a mission to do something.
So what had she decided on? Well, of course, she’d found an old ‘Paint a piggy bank’ craft kit, and decorated a little china porker. Her eyes were pinging from side to side. She had blue hands, a blue face, blue pjyamas, a blue bum, a blue blanket on her bed, blue feet (and footprints). And a very blue pig.
Our hall and landing need a lick of paint. The paper’s been stripped and we need to replace the old carpet. I’m seriously thinking of getting a nice shade of cream Dulux, a big fat brush, and sticking it on the landing. If she’s going to put in all these nightshifts she might as well do some proper work.
Chairs were strewn around one corner of the schoolroom. A table had been upended, its legs sticking up like fenceposts. My daughter sat on a chair, strands of hair escaping from her ponytail, her glassy eyes darting around, sitting down, enfolded by her teacher’s arms in a hug that I realised wasn’t a hug - it was a restraint.
The toppled furniture is the image that will stay with me. The idea, the unimaginable idea that my daughter had done this. My girl, my sweet girl.
The chargesheet of behaviour at school was long and eye-opening. Well, there wasn’t an actual chargesheet, but in my head what the teacher told me seemed to belong in a coffee-stained brown folder containing badly-typed misdemeanour forms with a mugshot at the top. Yes, I probably have watched The Wire too many times.
She’d disrupted the class with shouts, laughs, opening and closing doors, kicking doors, sweeping objects off the table, throwing and breaking her glasses, and kicking her teacher.
She’d been removed to another room, where she’d decided to f**k up the feng shui.
Her teacher, whom she loves, had borne the brunt of the behaviour, earning some bruised shins in the process. When my daughter headed towards a computer, with the obvious intent of smashing or hurling it across the room, it was this same teacher who had to hold my girl in a gentle T-Wrap restraint, wrapping her arms round her torso.
The odd thing was, at this point, my girl hadn’t struggled. She relaxed instantly and almost seemed to be enjoying it. The sensation of being held, the closeness, the ‘hugging’-style of the hold seemed to calm her to a degree. As I walked in and she looked up at me, smiling, giggling, looking searchingly at my face as if she was thinking: “What will Mum SAY? What will she DO?”
I talked quietly to her about how this wasn’t the way to act. I spoke to the members of staff, in the room, I didn’t engage much with my girl, because that jittery look was there, that blinkered, almost hallucinatory, exhausted stare that had escalated like her behaviour after a week where she had had roughly 13 hours sleep in the same space of time when she would normally have had 84. Every one of those lost 71 hours seemed to be whizzing around inside her brain. Every one of them too had appeared in the form of what seemed to be a corresponding number of white hairs on my head.
____
I’ve taped the night-time shenanigans. She’s unaware of this. I sat with my back to her bedroom door, staring at the picture of the old-fashioned radio mic on my iPhone’s Voice Memo App as it recorded the mini maelstrom of emotions going on just a few feet behind me.
The night before my daughter’s audition for Strictly Come Classroom Wrecking, she had continued the pattern of the previous four nights: silly noises, shouts, tears one minute, rapid-fire arguments with herself. It had got so loud that we had bundled up her little brother and delivered him for an unexpected sleepover at Nanny and Grandad’s. I’d decided to use my phone to get an audio record of what was happening, which we might need to play to teachers or medical professionals. I stayed silent and record each outburst until I heard the scrape of her bed being moved, or her chair being dragged across the floor and I had to react and check on her safety. By the morning, her bedroom, which normally looks like a particularly pink library, resembled a particularly pink youth offender’s cell: stripped of the shelves-full of books and toys. I’d silently removed them as they’d been systematically pushed onto the floor throughout the week. “Bugger me, she’s got a lot of stuff!” I thought to myself later, as I lay in bed later surrounded by a New York skyline of teetering piles of Lemony Snicket volumes, Hello Kitty notepads and Lego sets. ____ Her fish tank is now downstairs. I had a sudden terrible thought of what damage 70 litres of water could do if things got really out of hand.
____
I’d been trying to contact her consultant paediatrician, who'd been seconded to another ward and was trying to be in six places at once. Eventually her secretary called me back, having relayed my exhausted, rambled recounting of the wildly out-of-character behaviour being displayed by my daughter. I could see the on-call consultant on Saturday morning at 10am.
The nurse saw us almost immediately and I asked to speak to her in a side room, away from my daughter, so she couldn’t overhear. I told her what had been happening, my battle-scarred bravado shield shattered, and I sobbed. It was my turn to get a hug. I don’t think she was restraining me. As our wait turned into a FIVE HOUR patience endurance test, fraying the last of my shredded nerve endings, the same nurse was hugely sympathetic and brought us a cup of tea and promised to fetch us from the shop if we wanted to pop downstairs. My daughter, meanwhile, was riding a more sedate teacup ride of emotion, not the white-knuckle rollercoaster of previous days. She read every book in the bookcase, out loud, at high speed, but in an unobtrusive whisper, and was basically quite content, very likely helped by the fact that even in our shell-shocked state, we had instinctively remembered to pack healthy snacks and a packed lunch for her.
____
Finally, after we had been there so long that we worried three world wars might have taken place and everyone was now riding round on jetpacks, the consultant appeared.
He was great. I mean really great. He said he had treated quite a few patients with Prader-Willi Syndrome, and the wave of relief that washed over me as soon as he said this was like the rush of a powerful drug.
My daughter, of course, was angelic, and responded to every instruction as he gave a thorough examination, feeling her muscle-tone, examining her eyes, arms legs, knees, feet, stomach, and answering his questions shyly, timidly, snapping back to a dark eye-shadowed version of her old self.
With her out of the room, I played him an excerpt of the angry night-time roaring.
He was honest. “I don’t have a solution, today. There is nothing that leaps out immediately that could be causing this. I can go through with things that it could be, and we will take bloods and urine and do some tests. I will liaise with her doctor and we will go from here.”
He gave us some potential causes: a urinary infection, thyroid problem, sudden onset of a side-effect of her injections of growth hormone called ‘benign intracranial hypertension’. He reassured us that if this latter problem was the case, the hypertension would disappear in a relatively short space of time if we stopped her nightly injections. “We’ll discuss if an MRI is necessary to look at this.”
He gave me a look that made me steel myself. “Of course, as you are probably know, some of these types of behaviours do fit into the pattern of PWS, although as you know they vary tremendously from patient to patient, so you do need to be aware that this could just be her condition.”
I knew this, I already knew, it didn’t make it easier to hear, but it was a help that he wasn’t sugar-coating it and was knowledgable, sympathetic and bloody well honest.
“The prolonged nature of the sleeplessness is very unusual,” he added. “I’ve never come across anything like it in PWS patients before - not for the length of time we’re talking about, which perhaps would point to something physical being an underlying cause. Stop her growth hormone for the time being, we’ll do the tests and we will go from there.”
So that’s where we’re going from here.
She slept for pretty much most of the night last night, with no loud outbursts, as the week finally caught up with her. I gazed at the alarm clock as my boy came and jumped on my bed at 8.10am; my daughter was still asleep in the next room. Right then, wrapped in the warmth of my duvet and a good night's sleep, I felt like I'd won the lottery.
After a week of peaceful bliss, we’ve had 48 hours of pissful bleak.
Stormy nights and subsequent jitterbug days, where the wild-eyed, chatty, manic, full-on force of my teenager after a night with only a few hours sleep has been a sight to behold.
Her exhausted body and her brain seems to be switching to her back-up generator and turning the dial up to 11.
It’s quite astonishing to watch.
Her only button working at the moment is TRANSMIT. The RECEIVE switch seems to be stuck in the off position, possibly from a build-up of sleepy-dust.
I’m taking her to an electrical repairer's tomorrow. That, or a can of WD40 might do the trick.
A handclap echoing round a silent house in the early hours of the morning sounds a bit like gunfire.
RAT-A-TAT-TAT!
It’s loud. Really loud.
RAT-A-TAT-TAT!
I crawl out of my bed and trudge into my daughter’s bedroom, my patience twanging in the air like broken guitar strings.
“You HAVE to be quiet, now. You can’t carry on like this. No-one is getting any sleep,” I hiss.
My daughter seems to exist entirely of ruffled hair and huge, wild, staring eyes. The hysterical laughing starts again.
“Enough. This isn’t funny.”
A strange look comes over her face. She doesn’t look right. She doesn’t look like my daughter. I suppose it’s hardly surprising, as this is the fourth night in a row when she hasn’t had any sleep. I’m not exactly sure what she’s running on. She looks like she’s been mainlining Pro-Plus and coffee.
“I’m PISSED OFF,” she shouts. “I’m PISSED OFF.”
I’m taken aback.
But this is just the start.
“I don’t fucking care. I don’t FUCKING care. I don’t FUCKING CARE.”
I try to hide my astonishment. It’s as if my daughter has been replaced with some sort of boggle-eyed swear-bot.
Using a huge amount of effort to keep my voice calm, I tell her: “We don’t use that kind of language in this house.”
For all the notice she takes, she might as well have answered: “I think you’ll find we fucking well do.”
Eventually, she stops. Other noises take over: a yodel, animal sounds, more handclaps, guttural laughs. Peace finally comes at 4.30am. For half an hour. Then the silence is broken by a yelp, and I bundle her downstairs so she can’t wake her brother up. ____
A week later, and the intensity of the night-time ravings and rantings has subsided a little. We’ve had one night’s sleep followed by an up-all-nighter, then two night’s sleeps, and another insomnifest.
School have been aware of what’s been going on: one day in the middle of the maelstrom, she decided to spend the entire school day shouting and making strange noises. Her teacher has been brilliant: she’s come up with a detailed behaviour management plan which we’re linking up to use both at home and at school.
We’re trying to pinpoint what’s triggering this. If we can just get back to more than a couple of night’s catch-up sleep, I think we can break the cycle.
Oh yeah, and just to add more trial to the tribulations, throughout all this, I’ve had an awful cold, cough, sore throat, the shakes, the shivers and the sweats. And all I want is a really good sleep.
Song is The Decemberists - Sleepless. It's kind of beautiful.
My daughter’s wobbly bike ride through life hit some serious potholes earlier this year.
