The 'New on Pump' thread!

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Morning all.

Great night: 6.6 at bedtime, so had some milk and (no carb) sausages just to top up a little to 7 ish as per advice. 12am reading was 7.2, 3am reading was 7.4, and this morning woke up with 7.2...quite amazing. It's the steadiness of the level which is like some kind of miracle. I'm sure it can't be like this all the time, what with exercise and illness and growth factors coming in to play...

And I haven't even mentioned the *time* saved. He's got ten extra minutes in the morning because of no lev, no novo! No fuss! We've barely sat down to eat our breakfast and he's up having finished, on his way...

Northerner, there has been absolutely no discomfort. None. When it first goes in, he says that for him it hurts less than an injection, then it does sting a little for a few mins (team say this is the 'foreign object' response) -- then nothing. Not even when the pump has dropped off him and dangled there, hanging by the cannula! There's a little bit of faff with how to clip it -- where, etc, but so far he's trundled downstairs with it hooked on his pjs, in his top pocket temporarily, in his school trousers (keyboard locked), on his waistband, in his lap while sitting...I suspect it's much more inconvenient for girls/women, but there are garter belts and things to make life easier...

I can well imagine that for you a bolus for a biscuit would be *such* an appeal! You seem to like to fiddle, tiny adjustments, and this is what E also enjoys so far. I'd guess that he's already feeling more in control somehow, like he can track things with less effort. What's interesting to me is that yesterday, when he started high for various reasons, he just took it upon himself to do tiny corrections up until lunchtime when he no longer needed to. We did not make the suggestion that he do it -- but he understands and trusts the system so implicitly (and understands his own needs, perhaps?), that he just hauled off and did it while at school (the first day, and during exams! eek). So there *must* be a real sense of what you do having *an effect* -- which again I can only guess is so liberating...
 
all sounds really positive bet you and son feel brill
 
Morning all!

Patricia, those levels are brilliant! It does seem from reading things on the other site i am on that its fairly common to get these levels all the time - of course the odd 'blip' due to some unexplained reason or uplanned exercise etc - but there doesnt seem to be the same unpredictability that MDI seems to have on children ( i know that some children/adults tick over very nicely on MDI). You must be very proud of E's aility to make good choices? I know i am proud of Alex when he uses his knowledge at lunchtime and either adds a correction or reduces if he is running low etc..I think our children are amazing - other children have the 'normal' worries of getting to school on time and remembering their homework etc..Our children have so much more to think about and seem to take it in their stride dont they?

Anyway, keep the diary coming i am loving reading it. Although it does make me feel more desperate to get Alex on the pump!:D

Mand, and all other mum's/carers, I too think this site is amazing and i have found so much advice and knowledge on here that i dont know what i would have done - especially as i ring our DSN and wait daaaaaayyysss for her to reply sometimes! I am sure that at one stage or another we will all be of help to each other, so GOOD MORNING to all you carers/parents out there! If anyone is lurking in the background - dont be shy,come and join us!:DBev
 
Hi Patricia ... I am so pleased for you both , those levels are fantastic by the way !!🙂🙂🙂🙂
 
Thanks all...And I forgot to say something else -- that in theory the night levels can be even better, because once the basal is set, you can go through on 5/6 rather than 7 without worry. It suddenly becomes clear to me how this is possible -- because it's so even!

Glad to know bev that these numbers aren't some kind of glitch and will end! I think you must be right. But it feels a little too good to be true at the moment! I understand that life isn't like this always, etc -- but just to know it's possible, after only two days, gives me renewed hope. If we can make so much progress in terms of numbers and confidence in two days, then I feel we will usually be able to do so in the future.

I must doff my cap to our wonderful team, who are responding very quickly and with unmatched expertise. We are not abandoned here to get on with it. We are in very close contact. Already though we can see couple of times of day where an earlier or later start in the change of basal may be worth a try -- and presumably in time we will make these tweaks rather than clearing everything with the DSN. This is as it should be. But they are giving us confidence.

Bev, yes. Our children are amazing. I've moved from a place where I was cursing my stars, to one where I am more than a little thankful for what we have. In our children, and in our resources. My beautiful son would not be alive if it weren't for circumstance. Everything is better than that, and is continuing to improve.

And everyone: yes. This site has propped me up many a time. I am always glad to keep checking in for support, a moan, or a laugh. Thank you!
 
Patricia, I have a 'stupid' question! How do you work out the initial basal amount? I know that only one insulin is used on a pump - but as your not using a 'slow acting' insulin - i cant imagine how you work it out?😱 Bev
 
Thankyou for this thread, it is very interesting reading.

probably different teams work it in different ways but I know at my hospital that the basal dose being taken on MDI is used then a certain % (I think 10%) taken off and then divided by 24 hours. So a completley flat basal profile to begin with. they then make adjustments from there.

I imagine that more expereinced teams will start people with some varied basal rates if it is already known when people need more and less basal.
 
This thread is of such great interest that I thought I'd 'stick' it for a while, if that's ok with you Patricia. That way it won't get 'lost' if we have a flurry of new threads.

There's a egular feature that they've started in the past couple of issues of 'Balance', but I have been very disappointed with it so far as it doesn't contain anywehre near as much good information as this!🙂
 
Thanks all -- and Northerner! I wondered what all the guff at next to the thread was, now I know...!

Bev, like sofaraway says, the insulin is slow dripped in, but you usually need about 25% less via pump than injection (absorption, lack of pooling etc). The team take the long-acting doses on MDI and divide it up, I guess for some starting from an even dose throughout the day. However our team started immediately with five different rates of basal, really incremental (eg 0.75 units per hour for these four hours, 0.85 units per hour for the next four etc) -- I believe these initial rates are based on our records and their working out of E's patterns. So it's worth keeping records for a good start I reckon!

It takes about an hour for every change in basal to have an effect, so you can judge how to tweak I guess by anticipating what tends to happen next.

btw, the Pumping Insulin book is pretty invaluable with all this too. We haven't looked at it since starting, but beforehand a lot about percentages of basal/bolus etc were helpful there.

re bolus ratios, we are starting back with standard 1:10 across the board. The times for the ratio application are ball-park, with breakfast starting at 7 am, lunch at 12.30 pm, dinner at 6 pm... this is all adjustable, and just gives a time frame during which a certain ratio needs to be applied. The initial standard 1:10 I'm sure is to allow basal to be set as well as possible, then tweak ratios from there. On MDI E's ratios were 1:8, 1:8, and 1:9, to give you an idea...

I'm now out the rest of the day doing nothing quite so interesting as all this! Well maybe. Teaching and giving a reading. Ciao for now. I'll check in asap!
 
Hi Patricia

As always, thank you for your detailed and helpful posts. I cannot express enough how impressed i am that E's levels are so steady so soon! It gives me so much hope for my son.

I will await your further posts. They really are the hi-light of my day because they are so helpful and positive and give me (and I am sure everyone else) such hope of better things to come!

Thank you, thank you, thank you! 🙂🙂
 
Hi Patricia

It might be unfair of me to ask you this as you new to pump, so just ingore me if it is!

My son likes to inject after eating so he can eat to appetite. But if he is high before a meal i get him to inject before eating. With the pump, could he inject some insulin and then at the end of the meal inject the balance? We can't do this on injections as he would not want two injections for one meal!

Not had good bloods today, all day. I do not like days like these. :(
 
Mand the answer to your question is yes. He could do a correction to lower the high and then bolus for the food afterwards.
 
Mand said:
Hi Patricia

It might be unfair of me to ask you this as you new to pump, so just ingore me if it is!

My son likes to inject after eating so he can eat to appetite. But if he is high before a meal i get him to inject before eating. With the pump, could he inject some insulin and then at the end of the meal inject the balance? We can't do this on injections as he would not want two injections for one meal!

Not had good bloods today, all day. I do not like days like these. :(
Click to expand...

i do feel exatly like you
 
Thank you Sofaraway! 🙂 That is excellent news! Roll on the 7th July when my son gets his pump! Can't come soon enough as control just not so good these days. We think it partly because he has come out of his honeymoon period so things gone rather down hill. Plus a bit of teenage attitude creeping in so he bit negative about his diabetes and all it entails at moment. Which, of course, i completely sympathise with him about. Anyway, hopefully the pump will make the difference i am hoping for!

Hi Grahams mom, how are things? 🙂
 
Will come back to all this at lunchtime I hope! In meeting all day...Still good numbers yesterday, but two hypos! Now adjusting ratios, will fill you all in asap...

Phew. O'night very steady as before though...
 
Yesterday all a bit of a haze as we are all over the place and exhausted...however, from what I can gather, all numbers yesterday were still under 8 (can you believe it!); however, hypo just before lunch (during which he sent a text saying he 'felt awful' -- very unusual). Also another hypo (third day in a row he's been low, though first two not hypo) just before dinner. Night numbers were very good, though he thinks a little high: 8.2 at 12am, 6.9 at 3am, and 8.1 at 7am. I'm sure we can peg this down a tad in time -- but so steady!

Changes made now are starting to include ratios and more importantly, *timing* of ratios and basal rates (eg because of 1.30pm hypo, lunchtime ratio -- which is higher than breakfast -- is coming into effect for 11am snack, as well as basal rate now tweaked to lower in time for midday. Also now lower basal rate for evening coming in at 4pm rather than 6pm, to try to prevent dip). We'll see the overall effect tonight.

What I *am* a little confused about though is how to know at what point ratios start needing tweaking, eg that basal's settled enough? Hmmm...will have to ask. We need to be able to make these decisions ourselves eventually, and I'd like to know sooner rather than later the markers for these decisions.

E going into town with a friend for the first time since diagnosis this evening. Although there is much more to physically go wrong (eg pump itself) -- I feel more confident generally, as he must too in order to decide to do it. If he wants to eat, he can bolus for it rather than risk the spike. (This *is* mediated though by the thought I have that he's walking into town, more exercise, what effect will this have? Etc! However we will just have to wait and see.)

Pump-wise, will be interested to see this weekend's patterns. Anticipate setting up a 'weekend pattern' for the pump soon, as we can already know that numbers and rates of insulin will be quite different from the weekend ones....all in good time!
 
Another note: mild hypo in town (why?) but dealt with fine.

Now suddenly there's a call that he's having pasta for dinner with friend -- medium bowl he thinks. Wants to 'dual wave' it: have some insulin go in with meal, rest goes in over few hours. Yes, I think. Race home to look up his figures: 30/70 split over three hours. Okay. Ring back: we can't figure out the carb.

Look up carb of dry weight of 90g in Collins, because friend's mum had thoughtfully weighed before eating. Collins is *wrong* here!! 90g of dry is 70g of carb. Collins says 22g/100g, which is the *cooked* carb, even though it's listed under 'dry'.

Argh! So the dose is messed up. First panic dose is 2units straight out (from Collins, 1:10). Then when calm settles, we decide to dual wave rest and see what happens.

Lordy. The skill here is learning to eye-ball the food. Not yet happening really. Turns out to be a small portion of pasta in his terms, rather than a large one...Then we wonder if he really didn't want to actually *say* 'small' in front of friends....

I await with interest the result of all this. Have the feeling it will be all over the place. Fingers crossed though that he doesn't crash while over at a friend's wanting to have fun. This is my only worry, the only reason to faff and fret.

Blast!

But he was 7.2 before eating (!). So really, we continue to go the right direction (she tells herself...).
 
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Patricia,
Was the hypo due to walking to town?
Just looked in the collins and your right it does say cooked weight and then it changes to dry? But is there much difference i wonder?
Let us know what happens later.🙂Bev
 
Gosh, Patricia! What a roller coaster! but i think you and your son are still doing so well because it is such early days and most of the time things are great for him.

I hate the pasta thing too as it tells you in dry then you have to work out for cooked etc! Very confusing!

Will be interested to hear how your weekend goes. I am starting to feel a bit nervous because you are doing such a fab job, but will i be able to cope? will my son be as good as yours? Oh gulp!!!!!!!!!!!!!!!!!!!!!!

🙂🙂🙂🙂
 
Exactly the question Bev -- we are leaving that basal rate just in case of the hypo coming from the walk.

Another pattern has emerged: morning highs. We thought the original one was from 'under dosing' the bolus because of the low night early on...But now it's clear that every morning he's high (14+) for a short time before 11am. SO....advice of DSN (and our instinct) is to instigate lower basal earlier, and/or change breakfast ratio again.

Other than that -- all well! Though he is still over at friend's, presumably coping....Good for him is what I say.

Mand, point about pump really is that SO much of it is programmed in. Yes, my son is fab. He likes gadgets and he likes the sense of control, so it suits him. But I can see how it would suit a wide range of people, children too: you can set rates and change day to day, so although being proactive makes things *even better*, not being so doesn't necessarily make things awful, if that makes sense? In fact, lots of teenagers go on pumps *precisely because* they are really having trouble getting engaged with it all -- and the pump helps them. So I think that we are particularly lucky -- but that in other scenarios, the control would also be much more successful than on MDI.

Re the weekend: we are going with the 'test' theory, eg keeping the same levels as weekday/school days. We know they won't work. But where and how they go wrong will inform how we deal with weekends.

Sigh. The 'science' of trial and error!

(p.s. Pasta. Bane of existence. But we all love it. We hope: better on the pump!)
 
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