We’ve re-upped. I’ve made contact with our new supplier*, given him the readies**, and my daughter is shooting-up*** again.
*been to the chemists
**handed over a GP’s prescription
***having a daily injection of growth hormone (Do you ever think you might have watched Breaking Bad and The Wire a little too fervently? No? Just me, then).
She was on growth hormone for just over a decade from around the age of around five. Although it was slightly more uncharted territory when she was little, it’s since become widely accepted to be beneficial for people with Prader-Willi Syndrome, and there’s some solid research to back this up. It helped my girl's body composition, strengthened her muscles, improved her motor function, gained her some height (before her spinal fusion put the brakes on this) and increased her energy levels and alertness.
But, a couple of years ago, my daughter's endochrinologist took a decision to stop the drug. I have no idea how I sleepwalked through that. I took my eye off the ball. Hell, I took my eye off the ball, left the field of play, showered and went home to Netflix and chill. My usual squeaky-wheel stubbornness was inexplicably oiled over. Enough of the euphemisms: I allowed a poor decision to be made and didn’t challenge it as I should have.
However, my niggling doubts about the course of action - or rather course of inaction - got nigglier, and my wheel started squeaking again. After a series of discussions* with her endochrinologist (*‘discussions’, ‘pleadings’ pick a word), and after a test which proved that she did have growth hormone deficiency, my girl is back on Genotropin.
My daughter has absolutely no anxiety about being jabbed in the thigh with a needle every night. She did have a slight wobbly ‘6 on the Panic Richter Scale’ episode in the GP’s surgery when she found out that we no longer need a big dial-up plastic pen thingie to load a cartridge with her entire week’s dose into and that each of her doses now comes in its own throwaway syringe. (No, I don’t know why this was so important to her, but it was finally solved by referring to the syringes as ‘cool little mini pen thingies’).
So under supervision, before bed tonight, she pushed the plunger on her cool little mini pen thingie. And as the liquid flowed into her, the relief flooded into me.
My daughter is fast approaching the age of 18. The downside of this is that it makes me feel old. The upside is that she now says she wants a glass of champagne on the day - which means I get to have the rest of the bottle.
Eighteen means - in paperwork adminy terms - she’ll be an adult, so things are now transitioning away. Her neuro-psychiatrist has referred her to adult services, social services are swapping, and her long-term paediatric consultant won’t be her long-term anything any more.
We’ll miss Dr Keya. Astonishingly, in 18 years, my girl has had just two paediatricians. Dr Keya took over when the first one retired, and overlapped with him at his clinic, so she’s know my girl since she was tiny.
We saw her yesterday, and I was expecting it to be a goodbye check-up. But it didn’t quite work out like that.
Dr Keya spoke to my daughter directly like she always does, and always has, with kindness, patience and interest. She knew knew about my girl’s back operation being a success. She also knew all about her being admitted to hospital with pneumonia since she’d last seen her. “Oh, they all told me about it on Ward 5,” she said. “I’m so sorry I wasn’t there to see you, but I was on holiday.”
“Now, because you will soon be an adult, you should be going to see a doctor who treats adults because this is what happens when you’re 18,” she explained. My girl nodded, solemnly. “You never know, you might see my husband because he looks after adults!”
“He DOES?” my girl’s head snapped up like a meercat on full alert. This seemed to be the most astonishing thing she’d ever heard.
Dr Keya couldn’t help giggling (a trait that makes me very fond of her), but composed herself and continued: “I’ve been talking to your endochrinologist, and do you remember we were going to look at your hormones and look at giving you that special hormone oestrogen?” My daughter nodded again.
“Do you remember we said we’d have to wait until after your operation to look at that? Well, I think what we need to do is get that all sorted. We don’t want to hand you over until we’ve got our plan set up for that, so would you be OK coming back to see us again?” My girl nodded again.
“Now, another thing you asked me last time, was that you wanted to know whether you needed to go back on growth hormone, because you and Mum thought you were a bit more tired now you didn’t take it. Well, we thought you could have a special test to find out if you need it. Would you be able to come and take the test?” Another nodded response.
The final check-up that wasn’t the final check-up after all, was over. We left, both happy at being listened to, feeling cared for, understanding what was planned, and pleased we’d be seeing Dr Keya for a while longer.
But we didn’t go straight home. The nurses and Dr Keya had all expressed concern about my eye, which was very bloodshot, sore, and teary. I’d had a problem when I’d taken out my contact lens that morning, when it had seemed to ‘stick’ a little as it came out. They advised me to swing by to the hospital walk-in urgent care centre before leaving.
After being told there was a two hour wait, and waiting for exactly two hours, I was seen by a nurse, who diagnosed a ‘corneal abrasion’ (I’m sure they did two tracks on Later With Jools Holland last night). "It's like a grazed knee, but on your eyeball," the nurse explained. This is now my new favourite sentence.
So I’m typing this at home, a day later, with an ointmented-up eye, and sunglasses on, having been told it'll take at least 48 hours for it to heal and to stop being so sore. Let me point out it is a very dull day, and I am coming to the conclusion that shades-toting pop stars are utter idiots, because it's really very dark when you wear sunglasses indoors on a dull day.
Mainly, though, I'm thinking about how my girl, my almost 18-year-old girl, sat with me yesterday through it all, people-watching all that time in the waiting room, asking me if I was OK when I puffed and panted through the pain. Thinking about how sometimes she can be amazingly grown-up. And also thinking ‘Ow, ow, ow’, of course, because I’m way more of a wuss than she is.
I’ve just treated my daughter to a lunch at a local restaurant. I let her put on her best jewellery and a smidgeon of lip gloss. We had tapas, she drank the spiciest virgin mary I’ve ever tasted, and I gave her my undivided attention, heaping praise on her for her improved behaviour, and emphasising that the outing was a reward for her efforts. The waiter referred to us as 'girls' when we made our order, and my daughter grinned and told me she liked having a ‘girls’ lunch’. After careful consideration, she told me she’d very much like to do it again, and perhaps take Nanna next time, because she’s a girl, too.
It’s a week since we headed to hospital, desperate and exhausted. It’s a week since night-times were an ardous, endless, worring blur. It’s a week since I looked my daughter and didn’t recognise her.
Things have calmed down.
Seven nights of sleep can make a hell of a difference. My suddenly wayward teenager has stepped out from the eye of the storm. The twister is still there in the distance. She’s wandered towards the whirling edge of it a couple of times, but we’ve managed to pull her back.
She’s been contrite. She’s tried hard. And above all else, she’s slept. Wonderful, sumptuous long, full nights.
The wind whipped up on Wednesday and I thought the cyclone cycle was about to blow again. I’m not pretending this is over: there were a few issues again at school, one sparked by an unexpected change that would have caused problems at the most peaceful of times. But staff dealt with it and unlike last week it didn’t escalate to epic proportions.
My girl’s consultant rang and spoke to me twice, at length, to discuss the situation. The blood and urine tests from our hospital checkover on Saturday have come back negative, so it’s not something simple like a urinary infection or a thyroid problem that’s been causing my girl’s sleeplessness. The doctor said she does want to organise an MRI to rule out the intercranial hypertension mentioned at the weekend, which means we could then put our daughter back on her growth hormone injections, which have always seemed to be beneficial. She said she was going to call my girl’s GP and did so, that day, prompting him to ring us and suggest referring our girl to a local service which helps children with special needs who have behavioural difficulties. This seemed like a good idea. We were happy things were being done.
And on Thursday, my daughter had a great day, dressing in non-uniform and going on a theatre trip with the school to see Goodnight Mr Tom (a trip I thought she wouldn’t be able to take part in if her state of mind and behaviour hadn’t mellowed this week). In the evening, she went to bed and to sleep without any outbursts. My husband and I ensconced ourselves on the sofa, armed with cheap champagne, expensive chocolates, and a DVD of Casablanca, and spent a hour or so at Rick’s Café, a Valentine’s tradition that just a few days ago I thought would be an impossibility.
Like your man Sam on the piano says: “it’s still the same old story, a fight for love and glory”. Well, I’ve got my fight back, I’ve refuelled with some love, and glory bleedin’ be, I’ve had some sleep.
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.
My daughter shares a drug habit with Sylvester Stallone. I know this seems the unlikliest pairing since that other famous bodybuilder Arnold Schwarzenegger teamed up with Danny Devito in Twins, but it's true.
In common with oiled-up muscle freaks the world over, my daughter has an injection of synthesised human growth hormone every day. Genotropin is the brand name. The same stuff Sly was arrested with at a Japanese airport a few years ago.
Don't worry: we're not trying to turn our little girl into a miniature female version of The Italian Stallion. For one thing, those pumped-up bobybuilders' physiques make me queasy. It's like looking at a condom filled with ballbearings.
No, growth hormone just happens to help make you taller and increase your muscle mass. Having Prader-Willi Syndrome means our daughter doesn't produce enough growth hormone herself, so we have to give her a shot every night. It doesn't make her muscle-bound, it just makes her stronger.
She's going to be on it for life. It costs thousands of pounds a year. This is why, unlike bonehead Bono, I will never stash my millions in an offshore account to avoid paying tax.
We’ve re-upped. I’ve made contact with our new supplier*, given him the readies**, and my daughter is shooting-up*** again.
