You are currently browsing the tag archive for the ‘ketones’ tag.

Yes, it’s been a bit like that: like ha ha let’s play ping-pong…

Sigh. Two nights ago E is 10 mmols at 12am. I do a correction dose, thinking okay not  bad number, little unusual to be that high 4 hours after eating, but hey… Then at 3 am I hear him coming to our room. He’s big now, bulky in the doorway like his father, and for a moment I have no idea who it is! Then he says, I’m 24 mmols and feel absolutely awful.

A sudden spike like this hasn’t happened in a number of months. And of course it would happen when R and I are both hammering through huge piles of work — markings, plans… Hence why I’m up at 12am testing him!

Anyway. Nothing to be done. All hands on deck. Check pump is working as far as we can see — fine. Give whacking huge dose of insulin (what the pump recommends plus a whole extra unit) and put him on 200% temp basal (eg twice the amount of insulin he normally has dripping in per hour).

We wait for the insulin to take proper effect, which we know will be about an hour and a half. Meanwhile E feels sicker and sicker, and then, with awful predictability, begins to throw up. We know he has ketones. He tries to drink water, but can’t keep it down.

An hour later his level has hardly come down, 22 mmols. This too is not unusual — with such a high, the body can become resistant, and it takes more aggression with insulin to lower things than it normally would. To cover all possibilities (in case something invisible is wrong with the infusion set currently in him), we do a set change. E as usual does everything himself, but we can see it takes everything he’s got, as he fights to do it between bouts of retching.

We correct again, again overriding the pump (which remembers what it gave an hour ago), in case some of the last correction dose didn’t actually make it in (in case the set was faulty: see the inexact science of all this! All guess work! And too much insulin of course will send him crashing into hypo, so you just do it and pray…).

It’s pretty dire. My heart breaks for him. He’s so exhausted he dozes off, and so I go back an hour later: 11 mmols, a massive drop.

Phew. It’s over. By this point it’s 5.30 am, and we are due up in an hour. I go back to bed, fearing that with all that insulin sloshing around yet to take full effect, he will be hypo in an hour. But I’m desperate for sleep.

At 6.30 am, he is 8 mmols. Not hypo. Phew again. Made it.

Poor E soldiers on. He gets up, gets himself out for school.

We can only think this is all from his cold. Which drags on and on: cough, chest, nose. I’m watching him closely for infection. He’s not 100%, but surviving.

So yesterday at school he begins to go high again, but manages it himself: overriding the pump for a correction dose, and putting himself on 120% temp basal all day. He wrestles his levels down… And we hear nothing about it until we are all home last night.

It’s hard to overstate the pride I feel in his grit. For getting through the night and pressing on, but also for then making his own decisions, the right ones, yesterday.

It’s also hard to overstate the grief I feel for a future where he will have to make it through nights like that on his own. He will have to do this stuff with no one beside him.

Once again I turn away from this thought. I can’t make it better, ever. I never wanted my children to have to be this strong. Yes — like I had to be. Those who know me will know what that means, and those who don’t will just have to believe me. So if there was one thing I wished for my children, it was not to have to deal with big heavy life too soon.

But life has dealt us this hand. This arbitrary hand. And our children will have to endure. E will have to endure things that most can’t imagine. The potential toll on his mental health, not to speak of his physical health, grieves me. My children will have to be unusually strong unusually young. Like too many, it must be said. Still. Why can we not protect our children?

***

I know that they will make it. Are from stern stuff, whole stuff, sound stuff. And they have us, who have with every fiber tried to give them what they need not to feel too alone too much of the time…

I know all this. But it all seems just something I tell myself to feel better when it hits me in the middle of the night.

 

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!

It’s been a long time — perhaps never — since our children have stared out the window and groaned at MORE snow.

But so it was yesterday as this latest batch began its descent. 

I can understand this. The winds are howling, the cold is biting. Go back to Russia! says daughter.

So. Four more inches on the ground. Schools closed. Again. OH has dug his way out to meetings, joining the long trail of people crawling to work through thick and thin….

I’m supposed to be in work finishing paperwork, paperwork, paperwork. In order to be ‘sprung’ at the weekend. Hurray! Marking done!

Uh, no. Oh well.

***

The babysitting went without a hitch. Though 20 minutes before we left E registered a lovely 2.4 mmols hypo. Ack. The exercise of the day was continuing to catch up with him. We under-carbed dinner (eg entered a lower number of carbs into the pump than there actually were; this produces of course less insulin as a dose, thereby keeping blood sugar levels slightly higher), and when we got back he was 5.6 mmols. Okay, but too low for the night. SO we went to Plan A for exercise, which was a snack (milk and a biscuit), and a 95% temp basal (eg slightly lower rate of insulin) for the night. He woke on a lovely 7.5 mmols yesterday, with a 5.4 mmol in the middle of the night.

So far so good.

He is back however to having recurring hypos at 11am at school. The rate of insulin for this particular time of day has gone up and down like a yo-yo the last few weeks. But clearly it must come down. Again.

And now… he’s got another cold. He’s feeling pretty miserable, watching The Bourne Supremacy on the laptop in bed. He’s eaten though, which is a relief — there is always the possibility of developing ‘starvation ketones’ if the process of glucose in/insulin to cover it is not mechanically maintained, even for a day.

It’s ridiculous to think about: you either develop ketones from too much glucose/not enough insulin OR not enough glucose/not enough insulin. Sounds suspiciously like a rock and a hard place, doesn’t it?


I guess you could say that if it weren’t for this group of folks, I wouldn’t have come back to blogging (okay okay, well I’m glad I did, even if no one else is!). And they are the good people on the Diabetes Support Forum. Also please note the link in my sidebar, pride of place in blog links…

I discovered this forum by surfing Diabetes UK, looking for something, anything to connect with in the early days. It started up in October or November 08 (someone will correct me, I’m sure!), and I joined in February 09 I think (again, one of the moderators will know this if you’re reading!).

And what a connection. The support, advice, information, good humour and sympathy found on this forum is unlike anything I’ve ever experienced, and has saved my bacon more than once. I am a pretty committed non-club person. I really don’t like ‘belonging’. I resist group behaviour in most circumstances.

However. The forum has and continues to be a place to go — really, if truth be told, the only place to go — where everyone gets it. And there are times when you need that more than anything else in the world. You just need someone to get it.

***

E ended up in hospital for a night in September. Pump malfunction, but we didn’t know that at the time and couldn’t get to the bottom of it. We tried everything. We had discovered him sky-high 3 hours after eating. Despite trying to correct these high levels with more insulin, within 40 minutes he was violently throwing up, and had high ketones. And begging, begging for it to stop, for us to help him. It was, I don’t mind saying, completely and utterly gut-wrenching.

There was a chance he had quickly gone into DKA (ketoacidosis, a life-threatening state of high blood sugars), so OH whipped him off to hospital. I stayed behind, because M was sleeping.

It was the middle of the night. The hospital is 30 minutes away. I was beside myself.

I got on the forum, seeing if anyone was awake. And lo, two young ladies, both with Type 1 diabetes, were. Their concern and knowledge was truly like a light in the night. I heard back from OH that E wasn’t in DKA, and immediately let the forum know. Their relief and joy were palpable, seeming to flood back through the computer straight into me. We talked for a while longer, until E was stable.

I will never, ever forget their solidarity through those couple of hours. The whole time, I fought back the feeling of complete desolation and despair I felt the second night E was in hospital at diagnosis…Which was without doubt the worst night of my life.

Only this time, it was different. I wasn’t alone.

**

Telling my daughter the next morning that E was in hospital nearly did me in. By this point we knew he was fine, and coming home… But she began to get ready for school, tears pouring down her face, refusing to talk about it. Dreadful. I made her stay home. I convinced her that she needed to see he was okay. And he was. When he walked in the door, she threw herself at him and squeezed him so he could hardly breathe. Everyone was a bit teary. Of course.

***

It’s incredible how much strength and hope strangers can give you — actually now of course I’d call the forum full of friends… but it’s the way sometimes that a stranger will enter your space, will give of themselves…in perhaps the way that family, for some reason, or even your closest friends, sometimes will not or cannot.

If there’s one gift from this whole life-inside-out turn of events, it’s the sure knowledge and belief in…well I’ll go ahead and say it: humanity.

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.