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Okay so R is now in Japan. Has been there for 5 days, back in four. Having a fab time, taking lots of pictures, and really reveling in the extreme aesthetic differences. Would love to be there with him…! We skype in the odd in-between times, the miraculous hour when it’s not the middle of the night for him or us… This generally falls in the afternoon. In fact one day I shot home from work for half an hour just to see how visiting Kyoto went! So the children have only spoken to him once in all this time. For a family that talks — alot — this has been decidedly odd. And I imagine E especially misses his presence: it’s hard to overstate how much young men need their dads. And in E’s case, he depends on his dad’s objectivity, his clear-thinking, his rock-solid reassurance (the only one E really believes, I know this) around anything to do with diabetes. So it’s probably doubly stressful.

Though everyone’s generally holding up well.

Except for the uh… hour long hypos.

So this exact thing has happened two nights running: a short dual wave (dripping insulin in) for pizza in one instance, fries/chips in the other. (Here I reveal my almost complete lack of cooking skills: we are all struggling with fairly naff food, being used to the dreamboat and exceedingly healthy, home-cooked stuff of R… Ack.) ANYWAY (again), short dual waves. Which usually cause no problem. So an hour after each ends, there’s a plummeting hypo. A very bad one. Taking not one, or two, or three, but FOUR treatments over the hour to sort. E’s fairly swimming in apple juice, and ill from jellied sweets. The adrenalin has kicked in, and he’s panicky, upset, cross…

And who can blame him. Really, really, really a DRAG.

Then, having sorted the long hypo from the night before, yesterday morning I walked into his room and smelled it for the first time: pear drops. Sweets. I sniffed his bin. No, wasn’t that. I sniffed his covers. No, wasn’t that. I realised with a sinking, guilty heart that it was him, his breath. And that this meant he had possibly dangerous ketones. That he would be sky-high, and had been for hours.

Choice words, and crashing guilt. He was high indeed: 17 mmols.

In the event, the high cleared quickly. I signed him off PE (unsafe at 14 mmols plus), and by lunch he was in range. We communicated throughout by text.

Last night the same thing happened. Not just a funny turn then. Something going actually wrong. Four hypo treatments in the space of an hour. I got up in the night (because of the night before) and boy I was glad I did…Once again, he was 17 mmols. I corrected, and by morning he was still too high, but in a more sensible range, 11 mmols.

This is my theory, and R concurs (skype this afternoon!): first, his dinner ‘ratio’ (eg how much insulin needs to be given for each 10g of carbohydrate) needs tweaking. On the pump, ratios are set for different times of day and different meals, depending on insulin sensitivity. For us, traditionally dinner has needed the least amount of insulin (I think this is common?), and it is also the one meal that we change the ratios for quite frequently.

Second, the treatment of the hypos is inefficient. He almost always treats hypos with juice in the first place. Juice is very efficient, enters the bloodstream quickly. He doesn’t like, however, to drink LOADS of juice. So he chose to alternate the juice treatment with fruit pastilles.

The problem was, he was ‘dropping’. This meant that the peak of the insulin was not yet reached when he went hypo (this peak is around 2.5 hours after a dose, or in the case of dual waves, about 1.5 hours after it ends). So it was not a question of ‘recovering’ from a low, it was a question of keeping from going lower… Which didn’t work, both times. Both times he dropped like a stone.

I think I’m pretty clear that fruit pastilles simply aren’t quick enough in for that situation… They don’t work, so you treat again, it sort of works, but you must treat again…My thought is that they kick in well after they need to, stack up, and… result in a scorching high later on.

So. In that situation, no more pastilles. Just juice, just direct sugar. I feel sure that the lows could have been controlled sooner if only we’d stuck with juice instead of alternating with pastilles.

And we’ve changed the dinner ratio. And no dual wave tonight. So we’ll see what happens.

Sigh.

***

It may not surprise you to know that today, instead of marking or doing any number of other domestic and work-related things, I’ve just had a little breather: I met my dear friend Nancy for breakfast, and then later made a spontaneous appointment for the second manicure of my life. My fingernails are now a glorious deep teal blue. E says he’s ‘never really got why girls paint their fingernails’ — and I can sort of relate. I don’t really get it either.

But it is quite unadulterated fun. When I picked M up from school, she saw my nails and said, under her breath so as not to draw attention to them/her/me: how cool are they? how cool are THEY?

Here is a girl who relaxes by lying in a bubble bath, a bowl of chocolate on the side and an audio book playing. She’s as chaotic and non-girly and wacky-arty (seriously more so) than I am. But she gets it, which must be some kind of parenting triumph!

Looks black but is really deep blue/green...My eyes have barely a wrinkle -- but my hands look my age!

Setting sail

In November 2008 my 12 year old son was diagnosed with type 1 diabetes. The effect of this event on me -- and on our nuclear family -- was like being thrown overboard and watching the ship leave.

'Dealing with type 1' in the family has morphed into another sort of 'dealing' -- a wholesale resituating of parenting, of family dynamics...of life.

At my son's diagnosis I could not to locate a record of what living with a type 1 child in the family is like. I could not see myself or our family anywhere. I longed for a starting point, a resource and a sense of the future. Being a writer, my instinct is to write it. This space, I hope, is a start.

Blood Sugar Ranges (UK)

<4 mmols = low or hypo, life-threatening if untreated
4-8 mmols = within target range
8-13 mmols = high but not usually dangerous
14+ mmols = very high, or hyper, life-threatening if untreated

Bubbles

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Distance Travelled

Disclaimer

I am not a medical professional. Any view expressed here is my opinion, gleaned from experience, anecdote or available research.