Medical spin and the sleep study

Just a warning for all you humour lovers; this isn’t a funny post (or a Moroccan disaster post), more a reflective one.  You can switch off now if you want…

Now one thing we’ve learned over the years is that, by and large, “learning disabled” child equals limited professional help and virtually no  answers to any of the mysteries that may come with that child.  Sleep has always been an issue, and in the early days, when it became clear that LB didn’t really sleep much at night, we turned to the professionals for help and answers.

I was quite optimistic for something (not really sure what in retrospect, but probably anything really) when, aged 8, he was was enrolled on a big sleep study at a local hospital. This involved wearing a wristwatch monitor thing for seven days. It measured sleep and awake times and produced graphs.  After a week, the researcher came back, a bit stressed, saying the monitor hadn’t worked properly.  It was fitted again. The second week, when it became apparent that it had worked properly, LB was discharged from the study for extreme sleep behaviours that would skew the results.  The official line, courtesy of his medical records;

Investigations at the Sleep Clinic, Hometowny Hospital, indicated that his sleep pattern is consistent with the behavioural phenotype for his diagnosis of Klinefelter’s Mosaicism [one of several diagnoses that vary over time]. His family are resigned to the difficulties LB’s sleep pattern poses on daily basis.

Ok. Nice circularity going on here leaving us with crap all.

In practice, LB sleeps to his own pattern.  He stays awake a lot, and then falls asleep, or spends time lying down, when he can. Sorted. In a way.

One thought on “Medical spin and the sleep study

  1. Pingback: In the space of a few miles | mydaftlife

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