The 'New on Pump' thread!

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Hi all

Just a quick update: things going well generally, with numbers floating around 7/8 mmols most times. Yesterday a high (11) after a hypo correction (again, a mild one, have adjusted that basal rate slightly!), and during a dual wave...

Dual wave: we found a better system (we think!) for dealing with rice. We *used to* weigh risotto when made, but there's a heck of a lot of absorbed stock etc in that, so felt we were usually erring one way or the other....So last night, something different: weighed dry rice, estimated how much of overall amount he would have (about a third!). This equated to around 105g carb. Cooked rice rates would have produced a considerably higher carb. Also, it makes instinctive sense that a large rice meal would not be that far off a large pasta meal, eg 100g. It's good to know for estimating purposes! (Oh, and forgot: he also had a magnum ice cream as treat! That seems to have dosed no problem with a straight bolus -- no blip, anyway, in the middle of the dual wave!)

SO -- we dual waved over longer time (having hypo-ed at 2 hours into a 3 hour one last time): 4 hours, 30% right away/70% over rest of time. At 2 hours in, he was 12. At 3 hours in, 12. At 4 hours in, 9. At 5.5 hours, 8mmols. The long process of being at 12 seems a bit high to us, so we think we might try 4 hours again next time, BUT re-jig proportions, so that we are doling out 40% of dose at first (in an attempt to lower him quicker right away), then the remaining 60% over the 4 hours.... We hope this will keep him lower over that time frame...

But we are pleased with the four hour stint -- ending up at 8mmols an hour after dose finishes is pretty good, when he started at 7.7 or something....

Nighttime too seems stable now, though he *is* raising one mmol at the moment. We will leave it a night or two to see if it's a pattern, then maybe raise his night basal again to .75u/hour (which, ironically, was his starting point way back when!). We want to get him closer to 7 at bedtime more frequently, then we will really know what is happening with his rate. It's a good feeling though to be back in the land of night stability: he goes to bed on 10, wakes up at 11. Goes to bed on 8, wakes up at 9. Etc. We just need to get him going to bed a little lower!

We never corrected without food much on MDI unless over 12 really, because the effects were always too unpredictable, and it was so hard to know how much insulin was still about, and for how much longer, etc...

On pump corrections much more predictable, it seems, so yes we are beginning now to always correct (without food) whenever a number over 10 presents. Of course with the wizard, there is *always* an in-built correction, aiming for whatever your target is (in our case, 7.5) with food, in the same way that you would correct with food (aiming for 7 or whatever) on MDI. For us the difference in correcting is not what you do with food (you always correct, on MDI or with wizard, though wizard is more accurate), but how frequently we feel we can correct without food, eg anytime E encounters a higher number in the normal day of testing (eg two hours after meal or whatever)...

Hope that makes some sense...!

xxoo
 
Hi Patricia

Thanks for the update! Boy, you are doing well! Many congratulations to you all! As you say, everything is so much more controlable on the pump. We definately finding that.

You are at a nice stage where you have got the basics steady so now you are able to do little tweaks and also to experiment with different foods and dual or square waving. A good place to be at after all your initial hard work. Good for you! 🙂🙂

Please keep your posts coming. I read them with great interest. I will now go and update my thread. 🙂 xx
 
Oh that makes a lot of sense and an interesting read!

Thank you for explaining how you do a dual wave with E on pasta and the percentages. This is going to take me some time, but also because I dont eat a great deal of Pasta and Rice so wont get to try it often to perfect it. I also dual waved this evening and didnt extend it for long enough. I guess I need to analyse its purpose somewhat and think why exactly I am using it and extent its durration for better effect. What I have learned from you though is that you use a larger percentage in the square wave than I have done as yet so I shall adapt a bit. This technique takes some perfecting!

How does E seem in himself? Is he settled (as it were) with pump life do you think? How are you doing. I am sure it must take some effort Patricia. I am a bit in awe at your above post. Its hard sometimes to crack those figures and make them make sense! I am so thankful of this forum now that I have access to this resource, I know now when newly diagnosed people say that it has really helped them. I didnt really ever take that on board, but this is almost a revisit of that having this kind of chat and contact on pumping. Many thanks!
 
Hey good to hear from you, guys... Just to say, that a square wave is different from a dual wave -- we haven't used a square wave yet, which doses insulin absolutely evenly over x amount of time, no percentage as a straight bolus right away. Square wave is good for porridge apparently (anything else, Adrienne?!) -- we were advised, anyway, to use it only for that right now.

Dual wave is the one with x percentage at first to cover the quick-ish carb, then y percentage over the next z hours, to cover the slow carb....

How is E in himself: well, pretty well really. Tonight he was hacked off with a set change -- a pain to do sometimes, particularly when, as tonight, drawing the insulin was a bit of a pickle, with too many bubbles and too much time....Diabetes is a pain, a nuisance and an irritation...Pumps don't remove this, of course.

HOWEVER. Once it's done, it's done. He has a bassoon exam on Tuesday, not really looking forward to it (who would?), second instrument, should do fine but used to doing great...so the added stress of a set change is a downer. Not a surprise. But again, boy would I take it away!

I wonder if, in some strange way, being 'objective' about the figures and maths etc is helpful? In truth, E doesn't make his own decisions at the moment about his pump tweaks...we do explain reasons for things, and check with him, but he always just punches it in, no problem and conflict.... I think that lining all this up AND dealing with the pump itself is a difficult one, lots of stuff to take on board. E is 'just' dealing with the pump itself and his life, and remembering things...but not with the tweaks and numbers, particularly -- though he always checks out our charts and sees what's happening. What I mean is that he is not responsible for decisions: this is the break he gets. And maybe why the number stuff is a little easier for us -- it's literally *all* we are dealing with, physically and intellectually anyway. Emotionally -- well, that's a different story for all of us, I'm sure...

Bye for now!

xxoo
 
We are exactly the same as you. Patricia. My son not making any decisions yet, so we have all the control at the moment so that for now he can just concentrate on getting used to wearing it, pushing buttons and changing the sets. One step at a time for them eh? xx 🙂 xx
 
Yes, it's a lot to take on board, really...And their lives are busy enough! Having children I think immediately means you become used to doing a few things at once, and you get used to your life expanding more and more to make room for what they need -- but our own kids of course have no experience of this, and have already expanded their lives to accommodate diabetes -- never mind a maths degree!

So...morning all!

I am entering this morning a bit frustrated -- though my husband, I'm sure rightly -- says we are getting there. Remember the higher than we wanted numbers with the risotto two nights ago? Well, we looked back, and ALL of the evenings after 9pm over the last four nights have risen, sometimes quite high (you may remember that, too)... We have been chipping away at the basal rate from 9pm onward, but it's clearly still not high enough: last night E was 17 (erk!) at 9.45pm. Took full correction from wizard, and at 11.45pm was still only 14 (erk! insulin resistance again). Another correction from wizard. By 3am (stagger lurch; I didn't do it!) he was down to 9.4 -- and this morning, woke up on 9.3 or something.

Two things from that: first, what a stable as a rock level for him at night! Good grief! Just like old times, before France. Second: we need to be more assertive with the evening basal. Sigh. I know why we are nervous -- in early days, we were having to scrape him off floor before bed, work to get his numbers up...This was on a basal rate which is *lower* than what he's on now that time of day!

We have now resigned ourselves to him growing again -- only explanation. There has been no consistency of difficult foods (no strawberries last night!) or dual waving. So a change for the evening is where it's located at the moment. He just needs MORE INSULIN! Sometimes that's the answer...

But I wish the problems were in the day! Then he could correct and we wouldn't be up all hours tracing it all through...Sigh. It's like a surreal world in the middle of the night: we all get up for the loo, the cats perk up and think it's time to play (trip us up then sharpen their claws so loudly it's like maracas shaking), we listen to World Service or in extremis, make a cup of peppermint tea. Lordy!

We are also changing the lunch ratio a bit, as there have now been three occasions in last five of 10+mmols 2 hours after lunch. We are taking this *very* slowly, only adjusting by 1g, because traditionally late afternoon is a hypo time for him. This is also why we are not raising the basal here, hoping the ratio is the difficulty.

Feeling like I'm watching a good hba1c slip out of sight. Oh dear. So want this for him. But looked back over his records, and though most were mild, in the first two weeks of pumping he did have a lot of hypos. Not out of the ordinary for him as it was the same on MDI too -- but compared to now, he had loads. I guess perhaps for this little time we're exploring the other end of the spectrum, chipping him down slowly rather than always trying to raise him up, which is where we were...

Sigh. I know that 6s and 7s are possible with the pump, consistently, even with adolescents. It feels out of reach at the moment -- and I want it! Blasted growth hormones!
 
Thanks for keeping us updated Patricia. I know it must be terribly frustrating, but do remind yourself of how much more difficult it would be to make adjustments on MDI. Hope you find the balance soon!🙂
 
You're right, Northerner. Must...hang...on...to...this. Just feeling muzzy and a little cross, dreams having been full of mmols gone wrong!

Thanks for the back pat. Really appreciate it.🙂
 
Hi Patricia,

Sorry to hear your feeling a bit down about the levels. But i suspect that this is just par for the course - it is like starting all over again isnt it? But this time - you are far more knowledgeable than at the diagnosis! At least now you know how to put things right and chip away at the growth hormones.
Remember that A is still on MDI and trying to cope with growth homones on this regime is so difficult and takes literally days to achieve a better level! At least it can happen within a few hours on the pump - far more within reach than on MDI!

I am reading this with interest as i know that we will be going through much the same - but what i keep reminding myself of - is that long term -managing the pump is streets ahead for accuracy as opposed to MDI!

Like Adrienne has said - trust the pump and be guided by the numbers - your not a failure at all - the numbers pop up for a reason and its brilliant that they do - so lots of tweeking can be done! There is always a reason for a high/low numbers - and the best bit is that its within the pumps capability to bring the levels within range.
If it happens to be growth spurts - then in a way that makes life a little easier - because at least you know what your dealing with!🙂Bev
 
Yes, absolutely. And as ever: thank goodness he *is* growing! I had the feeling we were running to keep up at the moment, and it looks like I'm right.

And you're right. The response time for the pump is just a whole different country than MDI!

Must remember this...!
 
Yes, absolutely. And as ever: thank goodness he *is* growing! I had the feeling we were running to keep up at the moment, and it looks like I'm right.

And you're right. The response time for the pump is just a whole different country than MDI!

Must remember this...!

Hi

Sorry been away for the weekend, no computer.

Patricia Patricia Patricia stop the fretting. YOU ARE DOING BRILLIANTLY (shouting so hopefully you can hear me wherever you are🙂)

You will hit brick walls and can't see where to go and you will need outside help from time to time. I often email my DSN still and they are great (we have three fab ones).

If you are having highs from about 9 pm onwards can I suggest you change the basal at about 7 pm. Always work from about 2 hours before the high. It is no good tweaking a basal at about 9 pm is the levels are rising about then.

If you are getting a flat ish rate all night then you need to get the level right at the beginning of that flat rate. I know that from midnight the basals for J (my daughter) are fine. So I need to get that midnight number good. So it sounds like you need to get that 9 pm number ok.

For rice I too use 30/70 but over about 2 hours.

For MacDonalds I use 60/40 over 1 1/2 hours.

For pasta I have got to the stage where I do a normal bolus for the whole lot and then have to put on a 150 % temp basal for 1 1/2 hours. That worked well last night.

Square waves - for those that don't know the difference between normal, dual wave and square wave, a short description (Patricia I know you know this).

Normal bolus - you give the whole lot on insulin all in one go.

Dual wave - you can choose different percentages. You chose a % to give in one go and then the rest of the % is given over a chosen period of time. For example you can do 50/50 over 4 hours. This means that 50% is given immediately like a normal bolus. The other 50% is dribbled in over a 4 hour period. (You can follow how much is being given on the pump screen).

You can do all sorts of combinations, ie what we do :

Rice : 30/70% over 2 hours
Chinese take away/restaurant : 50/50 % over 5 hours
If larger than normal amount of fat ie cheese on toast I would do 60/40 % over 1 1/2 hours.

Square wave - third and final way of delivering insulin. You do not choose a percentage. You do choose a time period. So there is no normal bolus immediately. The whole lot is given over a period of time.

This is not used that much (by me anyway). I have used it a couple of times but with J she always needs a lump of insulin as a normal bolus and then the extended bit.

A dual wave is made up of a normal bolus and a square bolus.

Hope that helps.
 
I hear ya, I hear ya! And I'm listening. 🙂Much appreciated. Good to have you back Adrienne, and hope your weekend was a good one?

We have a 9pm basal rate, but I think you might be right; we need to start that earlier if he's rising from that point. Other half is in contact with DSN today... AND yes, thank goodness for flat rate at night now -- just need to enter the night on a good number, as you say.

Think I'm just a bit whacked today! Have some deadlines, a room to decorate...Though we did manage to have quite a restful (in the daytime!) weekend, so that's good.

Interested in the basal rate use for food too...we haven't got there yet, but I can see how it might really work...Hmm...

Thanks as ever, Adrienne.

xxoo
 
I can so understand how you feel Patricia, but the others are right - you are doing a FANTASTIC job!!

I guess those growth hormones are not helping at all! Adriennes advice all looks really helpful though. (Adrienne - I will keep a copy of all that info for when we start using the bolus wizard. Hope that ok? Think it will be really useful stuff for me.)

Let us know how things continue, Patricia. Hope all settles down again soon.

I do so know how you feel about being up in the night! It really is surreal. My alarm goes off, i nip to the loo, check his blood, make an adjustment if necessary or fetch him juice if that necessary (thankfully rarely having to do either in night) then i have a drink myself and try to return to sleep. But that easier said than done! Then just as you actually getting there, the alarm goes off again! AAAAAAAAAAAAAAHHHHHHHHHHHHHH!!!!!!!!!!!!!! xx🙂xx
 
Can i just ask where the boys put their pumps? Alex is asking as he thinks he might drop it down the loo! I was thinking of making him a pouch to keep it close to his tummy? Thanks.🙂Bev
 
E clips his to his pocket, usually, either inside or outside it. He's also worn it on his belt, clipped onto his t-shirt neck, on his waistband... Always clipped though, and usually locked.

I would have thought that inside a pouch might be inconvenient? They have to mess with it quite a bit, and the easier it is to get to, the better? Not sure.

Even just in underwear E clips it to the waistband, so that's the loo visit okay! Sometimes if he's sitting down, he just sits it next to him, because it can dig in if clipped to waistband...
 
Can i just ask where the boys put their pumps? Alex is asking as he thinks he might drop it down the loo! I was thinking of making him a pouch to keep it close to his tummy? Thanks.🙂Bev

Hi

As Patricia says, a clip on the waistband or lots of teens wear it in their pockets, some mum's then sew on a bit of velcro on the top of the pocket, 'just in case'.

If J gets up in the night for the loo, I've watched her put it under the arm !!!! Bit different for a boy maybe, she sits down 🙂 but it's still under her arm. You can get pump packs from loads of places which if your son is a sports player would be safer than the clip.
 
My son started by putting his pump in the leather wallet provided and clipping it on to waistband but lately has been just putting it in his pocket. At the moment his is sleeping naked (but i did not tell you that!) so it just lies next to him.

I do not know whether it will continue, but so far he has not made any fuss or comments about it at all. He gets undressed/dressed standing next to his bed so the pump can rest on the bed whilst he is changing. If he finding it difficult he takes the pump off for just a matter of seconds.

Have not observed or asked re toilet duties! will need to discreetly investigate this! 😉
 
My son started by putting his pump in the leather wallet provided and clipping it on to waistband but lately has been just putting it in his pocket. At the moment his is sleeping naked (but i did not tell you that!) so it just lies next to him.


....ssssSSSSHHHH!!!! We wont tell a soul.....!

Patrica, good to read your updates but Adriennes right, you are doing such a great job, clearly! Just like MDI we can only try our very best and sometimes those readings will do what on earth they want. But you are doing so well. Look how much you have learned in such a short period of time....

Keep up the good work xxx
 
Thanks one and all! Mine's just in underwear, but always has it loose (the pump, not the underwear, ack!) in bed...

High after lunch today -- time for *another* ratio adjustment there, we think!

And after dinner still looking high...but less so, maybe? Will update tomorrow...

xxoo
 
Thanks one and all! Mine's just in underwear, but always has it loose (the pump, not the underwear, ack!) in bed...

High after lunch today -- time for *another* ratio adjustment there, we think!

And after dinner still looking high...but less so, maybe? Will update tomorrow...

xxoo

Just a thought but do you think numbers may be creeping slightly because the weather is less hot? Thinking back to this time last week and we were all suffering with our numbers in the heat....

Hope numbers turn out ok x
 
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