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23 May 2013

A diabetic life

Life with a diabetic child is often not straight forward. It is a perplexing and tricky condition and it doesn't always behave predictably. And the management of diabetes takes a watchful and observant eye. It's all well and good to say "but he should be self managing by now". But I've seen grown men and women repeatedly fail at this. And I've read heart breaking stories about the tragedies that can arise from low blood sugars, or hypoglycemia as it is technically called.  The fact is that low blood sugars affect brain function. And brain function is critical to the ability to self correct and self manage, and therein lies a huge problem.

Sometimes the signs are not obvious. It can start with a small meltdown, and a little bit of confusion or distracted behaviour. But for the child who has always been prone to tantrums and an inability to cope this is not outside of the ordinary. Neither is vagueness, as he has a history of inability to focus and concentrate, and frequently just does not 'hear' instructions.  Quite simply, he transports himself to "Heath-land", and often looks quite surprised, and frequently indignant, when I have to drag his mind unwillingly back to where I need it to be.

This morning he had what we should be able to class as "great sugars". He was 5.0 and that's supposed to be terrific.  But perhaps he didn't wash his hands well enough? Perhaps in his bleary eyed still sleepy and possibly hypoglycemic state he left a trace of nashi pear from the night before? Again, a self managing child would ensure he washes them thoroughly. I'm going to have to make some small changes to the house because of this.

Frequently when his sugars are 'lowish', I err on the side of caution and give him his insulin after he finishes his breakfast instead of before he starts.  This morning I did just that, and, following my insulin chart, gave him a lower and more conservative dose of the fast acting Novorapid that he has. After breakfast came the struggle to get him dressed.  He just wasn't concentrating and was tuning out, and being silly with the cat. Again this is not necessarily out of the ordinary for Heath. He's as vague as buggery sometimes. And prone to silliness and not listening.  

He then got dazed, confused, argumentative, distressed, and uncoordinated.  I looked at him, thinking 'but he's only just eaten, and surely his insulin can't have worked already'.  He went on like this 5 minutes.  It was close to time to leave, but I sat him down and did a test.  He couldn't do it himself, and I had to do it.  He was in another place altogether.  The result was 7.2 which would indicate all was well.  However I knew he wasn't right, so got him to eat a honey sandwich.  Because I was cautious about not over treating a non existent hypo I didn't give him a juice.  He didn't come good though, and completely dissolved, so I stood hugging him and just calmed him down, then slowly took him out to the car.  While we drove to school I ran over what had happened in my mind.  

I wondered if the reading had been false, both of them, due to non handing or poor handwashing.  The only handcleaning thing I had in my car was a Nikon lens wipe.  We pulled up at school and we cleaned his fingers and did another test.  This was more indicative.  He was lower, at 5.2, after eating a honey sandwich, confirming that my observations of him had been correct.  He had definitely been low.  So I gave him a juice to make sure he didn't plummet again, and I sent him, now much more happily, on his way. 

After he left, I got back into my car, and took a deep breath.  I played it over in my mind, and made some notes to change a few things subtly.  These episodes always it made me wonder how we'll manage as he gets older and more independent but not necessarily more effective in his diabetes management. .  His LSA (learning support assistant) last year didn't have that same eagle eye and quick reading of him just by the glance of an eye that his former LSA, the wonderful Chryssy, had.  I have it.  My brother now does too.  But the new LSA is excellent, and she rang, and we had a chat, because again, he'd acted strangely.  She was onto him straight away.  She is sensible, smart, and reads him well.  She's not Chryssy, who I became such firm friends with, but she's pretty good.

It would be wonderful if he could self manage even just a little bit better.  His condition has made my photographic work more complex and difficult to achieve, and I've been fortunate to have understanding and flexible clients, and supportive and wonderful family members.  It's not uncommon for me to have to take numerous phone calls when I'm on track or on a stud farm, and advise what to do.  My sister once phoned me on the first Tuesday in November at 3.18pm.  I went into a panic, thinking 'Heath!!!!', because I thought her calling me 2 minutes before they opened the barriers and let the Melbourne Cup away meant he was unconscious.  He wasn't.  Caroline didn't realise the race was about to start.  She just wanted to know if a crumpet was ok!  I said calmly yes it was, and was everything ok, and that the Cup was about to start, and she said 'sorry!' and we hung up.  It was no different when I was working at CSIRO. There have always been phone calls and problems.  It's just part of life I guess.

Heath took this image of Nelly swimming at Caulfield.  It's pretty good I think.
Heath and Nelly.  13 October 2011.

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