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Well, after reaching the summit to Tryfan two days ago, yesterday the boys in Wales apparently bog-walked (ewww! E reports bog water over his boots), taking measurements or some such — and then swam. Which I reckon was sorely needed, after several walks and no running water (ewww!).
Number wise he was okay all day, though a little high, but in the evening things went seriously awry. For whatever reason (too much free carb? too low a temp? the set becoming non-viable? — probably all three), at 6.30pm we got a message that he was 24 mmols (over twice as high as the high end of what we were all aiming for while he was away) and feeling rotten.
It was dark by then, and they have no electricity. E had been trying to change his set (due a new one) on his own, with a torch, ill from being high, and stressed to the max. And wouldn’t you know it, for the first time since changing over to sil sets, his pump read NO DELIVERY.
A number of things then cascaded into wrongness. E was holding up, but only just holding on.
OH talked him through. Minute by minute, several phone calls, clear instructions. Try a new tube. Then a new cartridge. We gritted our teeth as E described all his pump equipment strewn around his bed in half-darkness. Talk about stress!
Tell someone, I texted him, in some desperation. They will be sad to know you are struggling.
He was still 21 mmols, despite a huge correction.
All of us had forgotten that he remained on a low temp from earlier in the day.
At last the new set was in with insulin that looked viable. But E was terribly shaken, still high, and of course would not be able to join the others for dinner (it’s unsafe to eat when that high for obvious reasons: more glucose stacks into the blood).
When E is that high — and I think this is a common reaction — he becomes emotional and muddled. He has to make a supreme effort to exert his considerable strength of mind and intelligence to trying to gain control, to understand sequences. The added stress of being away, in the dark, and on his own, meant that for a short time, it was a losing battle for him.
This end, we were losing our own battles too. OH was preparing himself to drive six hours and go get him. I was wrestling with useless tears. Daughter M, once again, had wisely set herself up for dinner in front of the box.
At last OH convinced E to go to a teacher. Who phoned within minutes. She had taken control quickly. Found things he’d lost. Sat him down to wait. Established how long he’d been high.
We tried to explain how he’d be feeling. We said it should get better. By this point we’d set a high temp, and anticipated him coming down fast. She’d saved some food for him. If he’s not down in a couple of hours, OH began — we’ll drive him to the hospital, the teacher said.
Probably not, OH said. They won’t know what to do either.
And this is true. Don’t even get me started on what medics don’t know. How they will remove pumps. How they will run both glucose and insulin in simultaneously (completely counter-productive). How they might think that 2 mmols is fine (when it’s mega-hypo), or that 6 mmols is too low (when it’s within range). Or that, so long as the person is feeling okay, 18 mmols is not bad (three times as high as you want). I’m sorry all you medics out there, but these are true stories. The training for hospital diabetes treatment must be seriously deficient, and is entirely crisis-oriented. By hook or by crook, diabetics survive hospital intervention. But so often it is ridiculously and even near-dangerously cack-handed.
Anyway. E had some carb free food: cheese, ham, cucumber, and immediately began to feel better. In 20 minutes his level was 17 mmols. He ate. In another hour, he was way down to 9 mmols. By this point the high temp was off. He had to have some free carb or he would crash. In another hour he was, yes, low at 3.8 mmols. Some juice, and more free carb.
Like a yo-yo. Poor lad. He set a 70% temp to reflect the exercise of the day, and we all agreed he could make it without night testing. Crisis over.
Only guess where they are headed today: SNOWDON. The highest mountain in Wales.
He must be shattered. Up until nearly 1 am. A walk lasting many hours in front of him.
We’ve barely heard from him this morning — a rush getting out, apparently. I’m fearful that last night will hang over him, tempt him into insecurity, into double-guessing his judgement. He’s SO good at all this. He’s great. We keep telling him.
A little prayer then: let last night go. Start the new day. Trust your instincts. Know that you are strong, and can do anything.
It continues to be all-go in our household. There are times when I feel like a drill sergeant. Sigh. And I’m sure my family would say the same (!).
However. Good news from last week’s clinic appointment is that E’s HbA1c is once again back down to below 7%. This is approaching the high end of ‘normal’ (I love this word – NOT. It means here the high end of a non-diabetic person’s HbA1c). SO this is all good news, and confirms our suspicions that the vast majority of the blip last time was down to the dodgy sets, the missed boluses, and some plain wacky numbers. Two weeks later and those blips have disappeared more into his ‘blood history’, the measurement is 50% from the last month, and the proof is in the pudding. As it were.
It’s a wonderful clinic. Sensors for the CGM are arriving tomorrow, thanks to their help. The doctors and DSNs are open, kind, congratulatory, and we always come away having learned something — or at least with something to think about. This is incredibly rare nowadays for us: diabetes is such an individual condition, that what works for one may not work for another, and the pattern of x may not be the pattern of y. Not to speak of how things can vary day to day. So a new thought is, unfortunately, not usually one we haven’t already thought of. Nevertheless, in this clinic (our pump one, not local) we come away with food for thought. For instance: one of the doctors picked up what might be a pattern: E tends to have a hypo (below 4mmols), about 8 hours after changing to a new infusion set.
This may be nothing. But it may be something. What we would do about it is place him on a slightly lower rate of 95% of his insulin for that time. Maybe it will work? One of the lows was a severe low — the ol’ favourite, 1.8mmols of ten days ago. Ack. Each time, we count our blessings that he seems to weather these well. I am touching wood like mad for luck, but so far even these lows have not caused him to lose consciousness, fit or even become particularly disoriented. As I say, I realise we have been lucky.
And speaking of temp basals, it’s been ‘low insulin’ city in our neck of the woods the last two weekends. E is keen to earn money, so has been doing a lot of gardening work: sweeping the drive, weeding, hauling cut down branches to the bonfire. Etc. Last weekend he went onto a 50% temp basal to try to account for the exercise, and still had four or five hypos (I know, I know)… This weekend we tried a different approach. On Saturday, a shedload of hypos. One after the other. We reduced him to 0% for at least half the day. By evening he was stable again, though on 95% through the night, again to account for the exercise.
On Sunday however, we whacked on a low temp basal (20%) AND under-carbed his food. For instance: scampi and potatoes plus veg weighed out and added up to about 80g CHO. He bolused for 60g, thus receiving about 75% of his ‘usual’ dose.
Interestingly, this seemed to work (aside from two hypos in the morning, before we cottoned onto this new idea, sigh!), combined with the temp basal. We did the same for the evening meal — risotto, a slightly awkward one, that he normally doses at 25/75% (eg 25% up front, 75% spread out) over 7 hours. Again, no hypo.
What’s been useful to think through is that it makes a kind of sense that if the body is sensitive to insulin generally at a certain time, then it will also be sensitive in all instances: so any insulin going in during a sensitive time is bound to lower the blood sugar more than is desirable — whether it’s a ‘long-acting’ basal insulin, or a ‘short-acting’ bolus one.
This is not something anyone has ever mentioned to us. I’m mentioning it here, and will do so on the forum. But it makes sense, and worked.
Will it work the next time, however?! Ah, who knows….
***
The reason we have been so happy to let E work like a dog (and yes, I have a list for him after school this week!), is that we have about 30 people for dinner on Thursday. Eek. Spare a thought. The GREAT news is that the weather looks very promising: hot and sunny. (And DON’T even mention the possibility of a thunderstorm to break it, as is the tendency is this part of the country! Just keep it to yourself. Touch wood….)
Last year at the same party E had been on the pump for less than a month. We had lentils. And it sent his numbers all over the shop, being low GI. That would be very unlikely to happen this time. Incredible the distance you travel. We have travelled.
But we don’t. After thinking the high numbers of the last post were set probs etc, here we are on the third day since the last change and ALL IS WELL. A relief. Stable ish numbers. A night’s sleep….
And lovely Cleo has passed the worst of being on heat. After two nights locked in the bathroom she’s to all of our great reliefs a bit more settled. Phew! No more earplugs, and a bit happier a cat….
Finally, exams: I phoned the school and they suggested 10% extra time to account for E’s lack of concentration. Which he has done.
It’s good to get in the habit of being obvious and up front about all this: hypo or hyper, he can lose at least 15 mins of a test to treating it. Now, he’s a VERY bright boy. He would do ok no matter what. We know this. The school know this.
But he never complains. He gets on with things. He thrives and excels. So when he says he thinks his performance is affected by his diabetes, the school listens. They want to set up similar formal provisions for him for GCSEs. Just to give him the best of all possible worlds.
They believe in him and trust him. I was quite choked up on the phone, hearing how much they thought of him. In his RS public exam the next day (part of a GCSE) his numbers were fine. But arrangements had been made for him to sit close to the door. All of the invigilators knew the situation. He came home saying he felt so much better now that nothing was unknown. Before he had gone into every exam explaining…. Uncomplaining and necessary, but hard work I’m guessing before an exam.
Anyway. For the first time I feel, tentatively, that the school is beginning to understand….
***
Morning at the hut.
– Posted using BlogPress from my iPhone
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.
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.
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!
Hello everyone!Â
I’m at last in front of an actual computer to write this (get ready for nice colours). The sun continues to shine — and we had a fabulous break. Yay!
Here’s what went well:
1) LOTS of good numbers, even with at least three days of fairly constant walking/hiking/splashing in cold lakes. (Thank you, not for the first time, the team that made temp basals. A godsend. For half of one day, we put E on a 0% temp basal, eg NO insulin dripping in. And for one night, we put him on 50%, because of exercise. All complete guesses. BUT THEY WORKED!)
2) One, count it, ONE hypo in a week. Out of routine, LOTS of cake, lots of guessing carb.Â
3) Only one day of inexplicable highs: all day in double figures. Oh well. We just pumped the insulin in, put him on a 120% temp basal, and by midnight he was down again. Growth?
4) Both of my children seemed to grow daily while away. Like plants in the spring with sunshine and showers. I kept thinking they were standing on tip-toe. It was incredibly peculiar. E is now clearly taller than me. His eyes are at my forehead. When he throws his arm around me, I’m like his little sister. Eek.
***
The best day for me was our first real day of walking. We had a close friend staying, and chose Cat Bells to show her and climb with her. We’ve done it twice before, before diagnosis. It was a gloriously sunny day. The way was crowded, but everyone was in good spirits. One of the joys of Cat Bells is the height gained so quickly, and within minutes we were treated to breathtaking views of Derwent Water, Bassenthwaite etc. As we climbed, the view just opened out more and more, til at the top of course it was 360 degrees of mountains and lakes. The weather was perfect: sunshine, not too hot, no wind (even on the tops!).Â
It was the longest walk we’d tried since diagnosis. The only hitch had been starting high — a forgotten honey on the toast dose! — but with insulin in to correct, and with the hard slog, E dropped from 17 mmols to 6 mmols in 20 minutes! We then put him on a 0% temp basal for the whole walk, and gradually raised it through the evening. No hypos. No highs. More cake.Â
We all got a little sun, and look about ten times healthier than we have in months I feel.
I also feel that we can do anything now!
I know we can’t. Without lots of planning and thought. And without lots of intervening low times. But the relief of being able to do this without panic, without short term or long term danger is intense.Â
The relief of being able to enjoy something, really revel in it, without the tight knot of worry or fear… is an amazing feeling.
***
Okay amongst the small things that didn’t go well is a distinct lack of photographs taken by me! Argh! Obviously delirious with joy at our successes…However, in my search for Cat Bells I have discovered a fabulous site: Striding Edge. Absolutely brilliant walks and photos of one of our favourite places in the world (so far!). Nearly 25 years later and we have not tired of it.
Here’s one of the site’s photos of the walk to Cat Bells. It shows a rather busy, sunny time, which is just what we had. A bit of a party atmosphere, actually! Enjoy.
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I know this isn’t what happens. I know it’s all controlled by invisible and unpredictable, minute shifts and changes, electrical messages and whims in the body…
But here’s what happens: cross country running yesterday for E. Traditionally bad news. All day though he manages well, no hypos. Last night before our bed he’s 7.7 mmols. We would normally put him on 95% temp basal (slightly lower the insulin) to account for the exercise. Only the night before, we’d had him on 110% (slightly raised insulin) to combat high numbers — and it had held him mega-stable til morning.
So we reason we will keep him on 100% — which is in effect a reduction from the night before. So should be okay.
We also decide not to test. There is no extra insulin, and only the cross country to be dealing with. And it has been controlled all day. And it has been two weeks since we’ve had an unbroken night.
This morning I wake him on 1.7 mmols.
This is for most an unequivocally dangerous level. For many, this would signal true disorientation and unconsciousness. Fortunately, for E, he seems merely to feel a ‘bit weird’. It’s staggering that he wakes at all, that he knows to drink juice. I am able to have a conversation with him, wanting to keep him awake. This is not the first time he’s been at this sort of level — and each time, he seems to be reasonably okay.
I don’t want to think about what would happen were he on his own. Maybe someone can enlighten me to this.
So this morning, the only way we can see to have prevented this hypo was to get up in the night and test. Ha ha, someone is saying. That’s what you get.