Sunday, 10 February 2013


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.

Video is Michael Kiwanuka - Home Again


  1. I am sorry for you and for your daughter. What a nightmare !

    However, I am happy that you found this consultant and that he is so knowledgeable about PWS.
    I am also happy that not giving her the GH shot could help.

    Take care of yourself and your daughter. Remember, you didn't create it, you cannot control it and you cannot cure it : do what you can and let the nay-sayers say, because they don't live with you

  2. Wow Drakey, you have my sympathy. I've lived with a difficult teen (very different causes, but occasionally VERY VERY challenging behaviour) so I know how ragged round the edges a prolonged period like this can leave you. Have a virtual hig from me.

  3. Would it be any help to you if I asked around some of our international professionals about the sleep problem? Or any of the behavioural issues? (I work for IPWSO)

    1. Hi, Tui. That would be great if you could. I know sleeplessness isn't unusual in older PWS children, but I wonder if any of your colleagues have heard of such prolonged bouts.

    2. I'd be happy to put out an enquiry. You can contact me directly through if you want to frame up the question yourself. We've a big pool of experts (other than mothers of course) and someone might come up with something.

  4. hi thought Linda i read your story and thought i would comment.
    sounds like my life but some years ago now. Our daughter is 33years old. She never slept much 10yrs to 20 yrs. she could sit quietly for a few minutes and then be off again. And some of the sounds that came out of her i could not do or say them. We removed everything from her room as i was sick of putting it all back the next day. Have to ask daughters age. does she have period or is her body circling. our daughter was and behaviours got wore at different days in the month. Injection of depro has helped and later epilium has and still helps, we up and down the amount. from 23 years we learnt positive behaviour management and it works the best. it is not all plan sailing but it helps. having a person centered plan and all following the same. having a communication directory. and all things locked, food etc. best of luck it works and is needed the most. Giving our daughter choice with in the bounds of her disability works also.