Saturday, 16 February 2013


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. 

Here’s looking at you, kid.

Video is As Time Goes By from Casablanca

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  1. Great news. Been thinking about you all. What a lovely treat for you both! Happy sleeping.

  2. Ah, blessed sleep. You never know how good it is till you're missing it. Happy for you. That's a lovely picture of your daughter too.

    Susan x

  3. Glad things have calmed down a bit.
    Here's a comment from a service provider who read your blog (I passed on your link)

    Yes, unfortunately, I personally work with others with, and without PWS that had similar sleeping problems..... especially when the state reduced HPC awake staff to OSOC funding at night.
    It created anxiety, hope to individual they would have more chances to food seek etc.
    Some consumers were in search of food, increased attempts to sneak, stay up thinking and thinking about what they could do at night etc.
    Trazidone and other sleeping medications were introduced 1 hour before typical bed time and it helped the individuals a great deal.
    There are SO many reasons for sleeping variations, I assume it is best to evaluate individual's current meds, , diagnosis, environment, life circumstances etc. sometimes, a sleep study is recommended as well.

    Other parents said:

    My 33 year old daughter has been recently introduced to different short term medication to help her sleep and is not agreeing with her. She is now in a zombie state.

    Please let me know if your child has taken any of the following medication and if so please let me know how it affected your child – Zyprexa or Seroquel (quetiapine).

    I have heard from support staff that the following medication has been effected with some PWS individuals – PROPRANOLOL – please let me know if your child has taken this medication and whether it was effective.

    I'll keep asking...

  4. Hi, Tui.
    My daughter has not been on any medication, apart from the Genotropin (growth hormone) she has been taking since she was 4. We've stopped this while the doctors are looking at what might be causing the sleeplessness.
    Interestingly, throughout all of these spells of sleeplessness and unusual behaviour, food seeking or obsessiveness has not been an issue - in fact she was probably less acutely aware of mealtimes etc than normal!
    We're still in a quiet period at the moment and sleeping has been good.

    1. My daughter was the same ie, no medication, but I once listened to a speaker who said that if drugs helped the person cope with life better, then to think about using them. I much prefer to look at managing behaviours, but, there are times when meds can help. I know your daughter is much younger than mine, but when mine was in her late teens and life was too much for her to cope with, she went onto Citalopram (anti anxiety) which really did help.

      Each person is uniquely different and that's where the problems lie, I guess.

  5. If by testing for a "thyroid problem" you mean they've checked her TSH levels only, that doesn't say SQUAT about anything. There are a range of various thyroid hormones they need to test to get an accurate picture of how the body is able to absorb and utilise the hormones. Unfortunately, the NHS will only test those if the TSH comes back abnormal (basically, over 5 - unlike in most other countries where they cap it at 3, tops).

    So yeah, you can still have a thyroid problem even if the tests come back "normal". I've had a multitude of symptoms for most of my life, and according to the doctors, there's absolutely nothing wrong with me, because my blood tests have always come back "within the normal range".

    You can check (Thyroid Patient Advocacy UK) for more information. :)