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By now you can take a wild stab at what happens after I quietly whisper ‘numbers are more stable’, as I did in the last post. And you’d be right. THEY GO CRAZY!

Stability has been out the window off and on now for a few days. Why oh why? We don’t understand. We wonder if these new sets are starting to lose effectiveness after two days rather than the three of the old sets. But this hasn’t happened consistently, certainly not since the beginning… Can it happen suddenly? Who knows? Who flipping knows?!

So suddenly he wakes high yesterday, after 1.5 days with the set. We battle him down a bit, but he’s still pushing high. Battle down. All through the night we battle down, testing 4 times, running a fairly high temp basal.

Wakes at least stable from 4am, though too high, 12mmols.

Corrects like mad. Goes off to school and EXAMS with a temp basal on. We don’t want to send him low because of exams, but not too high either because of exams — both ends affect performance — so he texts back at 11am that he’s 17mmols.

Argh!!!!

Corrects, and raises temp. 13mmols at lunch. But then, suddenly, coming home he’s 19mmols! What?!

We’ve whacked the temp up to 200%, and corrected, and an hour later he’s still only 16mmols.

Argh!!!!

And to top it all off, he feels that his performance today was affected by being high. He had a hard time concentrating, needed to pee through half the exams, and had run out of water mid way through another.

You know, honestly. You want to climb into a hole. How unfair. I’ll phone the school tomorrow, but I don’t know what can be done…

It’s three days tonight since a set change. So we will change again, yes. But it’s been going wrong for half the time the set’s been in.

What the heck…

I’m sure I don’t even need to mention how very much I wish I had been able to be in my hut watching the sky rather than typing up reports and supervising the electricity man replace the meter and helplessly fielding texts from my struggling son. WHO DIDN’T ASK TO STRUGGLE LIKE THIS FOR HEAVEN’S SAKE!

***

And to top it off our beautiful girl cat is in heat in the most LOUD and DISTRESSING way. She sounds distressed and upset ALL THE TIME. We can barely talk over her. We are planning to try to get her pregnant in late June, for the timing to be right…Meanwhile I barely slept last night what with all of her pounding around and complaining, and being up and down like a yo-yo testing…

And the sun is shining and I’M NOT IN MY HUT. And feeling sorry for myself. And for my son, who really did nothing at all to deserve this. Bad luck, hormones…who knows. But he’s on a roller coaster at the moment, and all we can do is just keep running the insulin in:

And try to get the tub full QUICK…

Dammit.

So we decide that the best thing to do is finally do a basal test with E. This involves concocting no carb meals so that we can get a good luck at E’s background or ‘fasting’ blood sugar levels. This means frequent testing too of course. But the early evenings and nighttimes have been very problematic of late: seemingly unpredictable, seemingly swinging because of foods (really?), exercise (really?), and growth hormones (probably). And we won’t even go to the issue of the set changes in the last few weeks. Heaven only knows the effects of that.

ANYWAY. So from 6pm yesterday, no carb. Great and inventive dinner of chicken marinated in yoghurt, mint, chili and lime — lightly pan fried — on salad, with some mozzarella slices. Then a sugar free jelly (jello). All of which adds up to maybe 2 g of carb.

SO. He starts a little high (9 mmols) so we have to correct and give half a unit of insulin, but don’t add anything extra for the food. Two and a half hours later he’s still too high  — 9 mmols. (This is without eating anything remember, so MUST indicate that during this time on this day the basal or background insulin is too low.) So we have to correct again. Two hours after that he’s 10 mmols. So we correct. Clearly being pulled high has outweighed the earlier correction. Then 3 hours later he’s plummeted to 4 mmols.

Sigh. This is *precisely* the opposite of what we had thought was going on, and which our adjustments had reflected last week. We had thought he was being pulled low in mid-evening (so we lowered the basal an increment) and he has been sky high in the mornings (so we raised the basal an increment). Whereas last night’s test revealed that — for that day, anyway! — he was as a result too high in the mid-evening and too low in the morning.

Back to square one. Or maybe not. Maybe it’s a one-off. Certainly we feel that his morning rises have been almost entirely hormonal — and irregular, unpredictable in the extreme. This is where we wish for a) smaller increments on the Medtronic and therefore finer insulin tuning and b) a willingness on his part to deal with continuous glucose monitoring. It would help enormously in this case not to just have little windows into his levels, but watch the pattern of it… Oh well. In time.

Add to all this that yesterday was a ‘stay at home’ day, in which he didn’t get out of his pajamas, and really, the test can only be a bit accurate… His levels will be quite different we suspect on a school night. We already run him on two patterns on the pump, with different basal rates — one for school, and one for weekends and holidays — so we no doubt have to do two ‘fasting’ basal tests too, in order to get anywhere.

Sigh again!

***

The good news is that another silhouette (45 degree) set is in. The positioning of the hand and the body can be very awkward and unsettling, but he held on to his nerve and did it. Done!

***

And finally, I wanted to show you what I did on Friday. I looked at life for really quite a long time from this angle. And wrote four poems. I don’t know why the coast has set me on fire in such a way, but it has. As a friend said, they are just coming out of the oven cooked.

I watched the tide come in, and how the angles and rapidity and groups and heights of the waves changed over the day. I’m completely fascinated by this. It’s meditative yes, but also occupies my mind in an unaccustomed and direct way. I focus, really focus, on what’s in front of me.

Enjoy. Notice the filigree patterns of the water on the beach, like lace. And the way that sometimes the waves surge forward, and sometimes they just drop. And that they arrive in groups, and that a third of them are larger than the others… This all just screams poetry to me. I realise this might just be me, however!

Probably possible! But when trying out the 45 degree sets two nights ago, E decided to do as they did in clinic and go through the steps with a soft toy. He chose one one of his older (but well loved then!) ones called ‘Manky the Monkey’.

Poor Manky. He held up well as E went through all the steps carefully, methodically, as he does. And it all looked alright at first, as you can see.

A Monkey and His Pump

Upon investigation though, we could see that the cannula/needle hadn’t actually gone in. Hmm…more complicated than we thought. The fixed prime (eg small amount of insulin to ‘prime’ the system ready for use) didn’t go in. And poor Manky would have gone very high very quickly!

Thinking we knew pretty much what to do and how to correct this problem (a too-soft backside!), E set up another and off we went.

Disaster. After a big build up (the inserter is much larger than the one for the Quicksets, and very fiddly to press and control at first), the needle finally shot out of the contraption — but didn’t go in. Something to do with angle, etc…But whatever the case, we’d had enough. E had had enough. We realised if we got it too wrong it could go very wrong, with the needle at an awful angle…

So we are off to clinic on Wednesday for some help.

Meanwhile, we continue to use quicksets, dragging out each sound one as long as we can. The set change tomorrow will last until Wednesday, when we can hopefully get going on the other ones.

Meanwhile, numbers have gone from being a little high just before the start of school — with high morning numbers in particular, very common — to now being a bit low. Culminating in an hour of 2.5mmols – 3.4mmols last night. Which was pretty miserable, and required the drinking of three cartons of apple juice, which made E feel sick and later upset his stomach, and an 1.5 hours of 0% temp basal. All at 11pm, when he’s dying to sleep.

Oh dear. A low day yesterday all around for some reason, and the last couple of days have been a bit low before bed, though not hypo. So it’s a ratio (eg amount of insulin to grams of carb) change for the evening meal tonight, in the hopes of tackling this. We think last night was so bad because he had three small things to eat at three different times (was in a short play and ate before, there and after!), so the too-high ratio of the evening rate was trebled in effect, if that makes sense.

You live and learn. And live and learn. And live and learn.

Manky is sleeping it all off in the green soft toy bin, anyway!

There are a lot of things this title could mean: I think we might all automatically think of post not being delivered. And with all the flight problems at the moment, there are no doubt countless things that cannot be delivered.

However, this is also the message which has popped up on E’s pump no fewer than FIVE times in the last four days. What this means is what it says: insulin is not getting through.

Fortunately we have so far avoided real disaster. And we are thanking our lucky stars that we didn’t have this circus last week while on holiday.

The main, and I would go so far as to say the only, down side of the pump is that when it malfunctions or something is dicky about it — it really is bad news. When this happens, chances are there is little insulin AT ALL in the body. And those of you who have been paying attention in biology will know that in people with type 1, no insulin spells dangerously high blood sugar levels — very, very quickly.

So far, out of the five problem infusion sets (because that’s what it seems to be, see below), E has only suffered one nasty spell, in which he felt terribly ill, very sick, and had high ketones. This in a matter of several hours, and with a high reading of only 16mmols (considering he was 30mmols when diagnosed, this seems incredible. But it tells you how very important ANY amount of insulin in the body is — because ANY insulin means that SOME glucose can be metabolised, and thus conducted out of the bloodstream, thus continuing this vital cycle. When NO insulin is there to conduct this metabolising, things escalate frighteningly quickly, and at surprisingly moderate blood sugar levels).

This is a point worth making: when blood sugar is 14mmols + and there is is little or no insulin running around in the body, then anything can raise the blood sugar levels further, even things which would lower it with insulin present, eg exercise. This came up the other day when talking to someone about the difficulty of negotiating long walks with E’s type 1. Can’t you just make sure he eats?  was the question. A sensible one, because then the starting blood sugar would be higher, thus in theory reducing the chance of going low on the walk.

Well, sort of. But if the blood sugar is too high without any insulin present, it’s dangerous. Exercise will push it higher. Because the body has no way of bringing it down without insulin there to smooth the way. (For example, see last post: E dropped from 17mmols to 6mmols in 20 minutes with exercise — but that was because he took a correction of insulin. With enough insulin in the body, the blood sugar level can lower.)

But it’s getting the insulin IN which has been problematic of late.

This is not a new problem. We have been bothered by funny sets since the New Year, when E bravely set out to spread his sites around.

We thought, and Medtronic (the makers of the pump) thought that the problems may come from dodgy sets. 

This now appears not to be the case. After a long talk with an incredibly helpful technical rep at Medtronic, we have come to the conclusion that this type of set (Quicksets) may no longer suit E. He is very slim, growing, with very little fat on him.

Insulin needs to go into fat to be absorbed well. But not into the same place over and over, otherwise there’s scarring and lowered absorption. So another can’t win for losing situation, but OH WELL.

The cannula of the set needs to be in a layer of subcutaneous fat, otherwise it may bend. As has happened to us now in two out of the five recent NO DELIVERY messages. It bends when it hits muscle, and no insulin can come out. It also hurts a lot more. It also may not absorb properly, and back up in the tube…and prompt the pump to send a NO DELIVERY message.

Sigh.

So Medtronic have special delivered new sets to try, that go in at 45 degrees and therefore are much more likely to go into a thin layer of fat rather than into muscle (Quicksets go in at 90 degrees, straight through the skin).

We wanted to wait to the weekend to see how the new sets went. E doesn’t like the idea of them. They are new. It’s a whole new thing. And it’s at 45 degrees. He has bad memories of having to inject at 45 degrees because the bruising on his legs was so bad from going into muscle over and over. He had to hold the injection pen at an angle, and it made him feel sick, unstable, to do so — rather than just jabbing it in to the hilt, straight off.

How we understand all this. But it must be done. He has had several days of fighting VERY high numbers, which is incredibly bad for him. Last night we discovered 15mmols before bed. Changed the pump to the old, working set (again: always leave the old set in! We have done this over and over in the last few days, always leaving in one we know works), and corrected, but then got up twice more to correct, and set the temp basal to 120%…all night. He had been missing a lot of insulin, had become insulin resistant, and it was a haul. 

He remembers nothing of all this, fortunately! We however are pretty pooped. 

So he’s at school on the old set, which is overdue to come out. Because we can’t even trust the suitability of the current sets to risk putting another one in this morning. Chances are greater than 50% that he would have been home within the hour with another NO DELIVERY sign. Even though we are back to using the old, more fatty sites. They are just not right for him now.

So tonight we will try the new sets. No choice! If they don’t work easily, we will whip off to the first clinic appointment we can book. Can’t go on like this. Feels unsafe.

Fingers crossed!

***

p.s. the sun is still shining!

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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Disclaimer

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