Tuesday, 13 November 2012


Two hours sleep is not enough to survive on. It makes you slightly unhinged. Margaret Thatcher managed on four, and to be honest that explains a lot.

Last night we had meltdown. I’m still trying to get to the bottom of why it happened, but so far I’m stumped. 120 minutes kip is not sufficient to keep the brain cells whirring fast enough to do the necessary sleuthing. I’m chalking it up to ‘just one of those days’.

My daughter had had a twitchy evening, asking random questions, repeating herself, and nervously sticking her fingers in her mouth.

The volume got louder, the questions more off-kilter.

“Am I going to shrink. Shrink. SHRINK?” was the starter for ten (explained by the fact that her prescription for growth hormone hadn’t been ready at the chemists, so she knew she’d miss her injection for one night).

Next minute, it was “Is Hitler alive? Hitler. Hitler. HITLER!” (this one made me laugh, I must admit. She’d been learning about World War II in her history lesson. Apparently at one stage, she thought he was in the school toilets). 

“No, he’s dead. He died in 1945, sweetheart. Sixty something years ago.”
“Ah, so if he hadn’t died he’d be dead.”
“That’s right.”

This was a bright spot in a dark night.

From this point onwards, my usually compliant, polite daughter clambered into her stubborn shoes and wouldn’t take the cement bastards off.

Getting her to have a shower was a battle I wish I’d never started. Getting her to clean her teeth was another. Persuading her to stop cleaning them was another. She didn’t want to go to bed, she got up six times for a wee, she turned her light back on countless times, searching her room for books she couldn’t find, wandering down the stairs to put them in her school bag and take them out again. All the time, all requests were ignored or given some serious attitude. “NO. I WON’T. I’M JUST DOING THIS. No, no, NO. I will NOT.” Every time I told her off, she giggled to the point of hysterics. Threats to ban favourite toys, and subsequent confiscations, had no impact.

I tried ignoring her because surely she’d flag, but after hours more of footsteps, bangs and crashes from her room, more visits to the loo, her dad ominously putting a shelf-load of books in a black bin-bag, more loud backchat, and finally, the piĆ©ce de resistance - wetting the bed (quite deliberately) at 4am, I gave up. Nothing, and I mean nothing was going to stop her mini-rampage. So I left her to it, and snatched a couple of hours kip.

This morning, I was shattered. My daughter, of course, was bright and breezy. 

She smiled up at me, bashfully. “I’m sorry, Mummy. I’m going to be really good today.”

Video is Eels - Unhinged

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  1. I am sorry for you.

    However, I could read this post on the blog DITW : http://divingintothewaves.blogspot.fr/2012/11/fpwr-conference-dr-jennifer-miller.html

    It sounds that GH has an impact on cognition and behavior.
    The missing dose may had set up such a behavior to Josie.

    (knowing about such a change can have its part though. However, my gut feeling says that missing the GH dose by itself has been enough to set up such a behavior.
    My other gut feeling is that Josie, as many people with PWS, are very sensitive of missing a medication dose. It can largely explain her behavior, even if she would not had known that the GH was not ready. It is only my gut feeling, so take it as it worth because I am neither a doctor, nor a parent, only a student in law)

    So, even if your night was way too short, I can only tell you that you could not do much. You wish you could, but unfortunately, you could not.
    Exactly like missing my Ritalin makes me ADHD +++++. No matter how nice and how helpful you want to be, you cannot do much in such a situation.

    Let guilt go far far away.
    And tell Josie that no matter what happened yesterday, you are proud of her. Tell Josie that I am proud of her for doing her best no matter the results.

  2. Oh boy! That was a tough night! I wonder if - as the previous post suggests - it was because of missing a dose of GH? Anyway, well done you, for getting through it!

    I love the apology the next day. This is what our kids are exceptionally good at - apologising!