Closed loop question

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Lilmssquirrel

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Hello

So I've finally convinced our PDSN to progress with our application for a pump but I am trying to understand more about how it all works before we have our various appointments.

We've had a number of instances where she's been high at night (14-16) and I've been told not to correct an overnight high until morning. So my question is, if she has highs like this overnight, would the pump try and correct this gradually by adjusting the background insulin feed or would we still be in the same position that she'd be high overnight and we'd correct with the breakfast bolus?

TIA
 
Hi @Lilmssquirrel

The answer is "It depends".
You have entitled the thread "Closed loop question". Does that mean that the pump you will get will be closed loop with a CGM or will it be a "standalone" pump?
Most of us have the standalone versions which make no automatic corrections but take into account the variations in basal requirements at different times of the day by setting up "basal patterns". If your daughter's BG always goes high overnight, you can set up a basal pattern that will take this into consideration and provide a higher basal dose over night.
My understanding of the closed loop systems is that they do not have basal patterns but will react to the current BG.
There is also a halfway stage whereby some pumps will not correct with additional insulin but will automatically suspend the basal when the CGM detects a BG which is too low.

All will require you to "dial up" the bolus when she eats.
 
I agree with @helli It would depend what you’re going to get. Just to be clear (not so much for you, but more for general readers) a normal insulin pump is just another insulin delivery system. It doesn’t take over control of your diabetes. That’s still up to the person with diabetes and their team.

If you’re actually going to be looping, then you’ll need a CGM and how the whole thing works would depend on your pump, the CGM and the looping system you’re using.

If you can tell us that, then you’ll get more specific answers. But, in theory, yes a loop can correct highs.
 
Thanks @helli

I'm hoping either for TSlim with Dexcom or the Medtronic 740g with a CGM.

Totally get needing to dial up a bolus when she eats but just trying to understand the benefits of closed loop or just pumping in general

We're having lots of problems with tummy problems following high sugars and i'm a bit frustrated that we're told not to correct high sugars overnight which seems to result in increased incidence of tummy problems and more time off school. Anything I can do to improve this will be really positive.

At the moment we are MDI with Novorapid/Tresiba
 
Lilmssquirrel said:
Thanks @helli @inka

I'm hoping either for TSlim with Dexcom or the Medtronic 740g with a CGM.

Totally get needing to dial up a bolus when she eats but just trying to understand the benefits of closed loop or just pumping in general

We're having lots of problems with tummy problems following high sugars and i'm a bit frustrated that we're told not to correct high sugars overnight which seems to result in increased incidence of tummy problems and more time off school. Anything I can do to improve this will be really positive.

At the moment we are MDI with Novorapid/Tresiba
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Ok 🙂

I think @everydayupsanddowns has the T Slim. I’m not sure who has the Medtronic but you could look through the Pump section or ask specifically about that pump.

It’s wise to be very wary of correcting at bedtime. I still am years after diagnosis and with a pump. Nocturnal hypos are the worst. So I do correct, but I aim for a higher number than I would during the day. I also often set an alarm to get up and test at 2am approx to make sure everything is ok. I’d rather do that than risk a hypo even though the risk is small.
 
Even if the pump is not linked to a CGM it would have the advantage that you can tailor the basal much more exactly to your body's needs, you can make small adjustments by the hour if necessary, with the result that if you get it set correctly you should be able to go 24 hours without eating anything and it should just keep you chugging along happily within the normal range. As opposed to injecting long acting insulin which works whenever it works over the next 24 hours and doesn’t necessarily match when your body needs it, causing BG fluctuations. On a pump in the above situation I would have no hesitation in correcting a high in the middle of the night, pump bolus wizard would calculate the required correction amount, correction would drop blood sugars back down to a nice sensible number and then hopefully they would stay there until the morning. In reality of course it doesn’t always work quite that perfectly, and sometimes you find yourself having to do quite a lot of fiddling to get everything set as perfectly as possible, and then it all changes again! But worth the effort in my opinion because you can fine tune things so much more precisely and hence should be able to get better control overall.
 
Lilmssquirrel said:
I'm hoping either for TSlim with Dexcom or the Medtronic 740g with a CGM.
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Do you know these are available for you?
Many CCGs offer a limited selection of pumps (mine offers Medtronic only) and there is no point getting your hopes up until you have discussed the options with your consultant.
 
What are the rest of her readings like? It may be that her basal needs upping or her evening bolus ratio is off. At what point in the night is she high? Generally it’s better to work out why the high is happening whether you have a pump or not.

And definitely see what’s available locally. We’re heading for a funded tslim (next month probably now as everything moves so slowly) and have self funded dexcom. Our team offer a fairly good range of pumps and we could have gone with a Medtronic but to me the costs were similar without many of the benefits of tslim/dexcom so we didn’t consider it.
 
helli said:
Do you know these are available for you?
Many CCGs offer a limited selection of pumps (mine offers Medtronic only) and there is no point getting your hopes up until you have discussed the options with your consultant.
Click to expand...
Yep - the PDSN has sent me a list of which pumps are available - both of those listed plus the Medtrum tubeless system. I have a feeling we're quite lucky to be under the CCG that we are compared to others.

Although with DD being about to move on to secondary next year, it's really important for us to allow her to be as independent and 'normal' as possible with this so I would consider self-funding to get a suitable system. It breaks my heart that as her peers are starting to be allowed out by themselves and so forth that I've had to say that no, she can't even walk to school by herself now because I'm worried about hypers/hypos or that she can visit a friend after school (presuming that might be allowed one day in the future) but she can't have a snack without injecting - I can see that causing her to not want to go so I'm determined to do everything possible to make her life as easy as possible. And I know pumps aren't a magic bullet either. I just want to make a fully informed decision 🙂
 
Hi @Lilmssquirrel

Good to know that you now have the clinic offering a pump, and that you are able to self fund the sensors to link up with it.

I have different ratios for my meals during the day as I have found that my needs change. I also change my correction ratio overnight to play safe on any late corrections. I am waiting for a Medtronic 780G which will add in a bit of insulin if I am going high and also suspect delivery of I go low. I think that corrections start from a profile that has been set up and then adjusted to meet your needs, correcting any minor errors or indiosyncracies. Like others I spent a bit of time looking through the feedback in the Pumping thread for the different threads.

High glucose levels always make me feel awful and I feel sick. I hope that the pump will help iron out these issues.
 
Thebearcametoo said:
What are the rest of her readings like? It may be that her basal needs upping or her evening bolus ratio is off. At what point in the night is she high? Generally it’s better to work out why the high is happening whether you have a pump or not.
Click to expand...

I just can't seem to get her stable. We have hypos regularly in the day and sometimes post bedtime - but then when I start to consider switching the basal up or down, she goes and does the exact opposite and ends up being hyper so I don't want to mess with anything. I've spoken to two different PDSNs about it as well and they have said not to fiddle with the numbers.

We moved to Tresiba as she said the Lantus was hurting on injection, but I understand the Tresiba has a much longer lead time in seeing if the change has had an effect.

It just worries me that in her swinging about so much between hyper and hypo that we end up with additional problems and I am just exploring to see if a pump might help us to smooth things down :(
 
SB2015 said:
Hi @Lilmssquirrel
High glucose levels always make me feel awful and I feel sick. I hope that the pump will help iron out these issues.
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Yep - i've got her home from school again for the second time this term already feeling sick and it seems linked to the high blood sugars. Before she was diagnosed, she was complaining of constant belly ache and it had been put down to hormones. She's a big girl - tall for her age and she was chunky up until recently. The assumption was she'd lost her puppy fat and was about to start periods. How short-sighted we all were (including the paediatrician we saw)
 
Great news that you have a choice of pumps which should give your daughter more freedom.
I don't want to scare you but you have to consider that pumps fail. This means that your daughter will need to be extra vigilant with regards to keeping an eye on her blood sugars (should be easier with a CGM) and have her old insulin pens on hand if necessary.
In the 6 years I have been pumping, I have had two pump failures so it is not often but as I rely on the pump for basal insulin, the consequence can be sudden DKA if I did not notice.
Pumps are often thought of as the "solution" but, thankfully, my diabetes team are pessimists so trained me well for failure. I was glad of this and would rather be ready for failure and it to never happen than to have no clue and panic when it did.
(OK, maybe I did panic a little but I was out with my in-laws who did not understand my "please leave me alone to sort this out" plea and got very upset when I walked off to find a quiet corner to make sure the thing that kept me a live was able to do its job.
Sorry - I thought I had got over that moment but there seems to be some residual frustration remaining.)
 
That’s very bad luck @helli :( I’ve been pumping many years (15+) and fortunately have never had a pump fail. It’s quite understandable it’s still in your mind. People see us coping but don’t realise the line we walk.

But even if pumps don’t fail, they do increase the risk of DKA (because there’s no depot of long-acting insulin in your body) so that should always be in one’s mind. It’s always in my mind when I’m ill in particular.

So do make sure your GP keeps her ‘old’ insulins on her prescription @Lilmssquirrel so you can always make sure to have back-ups.
 
I hear you on the independence. For us it’s got easier with time rather than anything else. We’re much more in the flow of which variations are to worry about and which aren’t and she knows herself how to deal with things and can always contact us. It was the most noticeable change as she’d been going to sleepovers etc before diagnosis. Obviously the current pandemic has changed things like that anyway.

Has she been screened for Crohns? We’ve not had any stomach issues with diabetes. Hormones do make a difference and already we can see some days she can have good control and then suddenly she can’t. If I plotted it I may see a monthly pattern in that. I would keep in close contact with your team and take on board their advice. If you want to do more data collection keeping a detailed food diary might throw up some answers too. Some people do react strongly to certain foods and it can mean the insulin works more effectively if given later or earlier. A pump would go some way to dealing with that but even so it’s good to know what foods are more likely to cause spikes or crashes so you can adapt to that.

She should get funding for a pump without a problem (it just isn’t quick) it’s then just the CGM that you’d have to fund if you want to make a closed loop type system. We’re on day 2 of Dexcom having not got on with the Libre very well (she hated the application and it wasn’t very accurate for her).
 
@Thebearcametoo thanks for the comprehensive answer as always 🙂

She was coeliac screened at diagnosis and the PDSNs are adamant there isn't a link between the tummy ache and the blood sugar. But Sunday morning, she had a standard breakfast of apple, toast and peanut butter (eats this six out of seven days - Saturday is bacon buttie day) and she spiked to 16 while we were visiting my friend. We corrected at lunchtime and she had a bagel with ham, cheese and salad. We then went on a walk for an hour and when we were on the way back she was down at 5.8 and still had 1.4u insulin on board so I had to give her a snack to stop her tanking :( We had roast chicken for tea with potatoes and carrots for her - again a standard Sunday meal. Yesterday she got up and said she had tummy ache - we've had a bit of trouble with anxiety about school in general but more to do with friendships changing as the class has been mixed up since the first time since Reception so I sent her in and she was back home just after lunch and has been parked on the sofa ever since, feeling very sorry for herself. She had pasta, salad and chicken nuggets for tea and then spiked up to 13.5 before bed so we kept her up late and gave her a correction. She dropped a bit after midnight and then bumped back up at 3am before eventually coming back down to the 5s around 9am - but refused food all morning.

She's now a bit more stable but is still feeling unwell.

Will take on the tip about keeping a diary about this. The previous issue was definitely linked to a pizza we had when we went out. We don't go out often and I'd planned on her having something like chicken and mash but they had pizza on the specials. We've had supermarket pizza without issue, but clearly whatever was in the pizza we had out, it caused her to rocket off the charts.

This is soooo complicated! And then I have to deal with going to visit my mother this week who has promised her Chinese for tea which I understand is also going to cause massive problems :(
 
It can be hard to separate illness which causes highs from highs which cause her to be unwell. I would presume she’s ill and that is causing the high. It doesn’t take much for my daughter to spike if she’s even a little bit off colour.
 
Really hope a pump works out well for you @Lilmssquirrel

Any pump can offer more precision and flexibility, and can really help to improve diabetes management, though as othees have said they aren’t a magoc bullet, do carry some additional risks, and can involve a bit of extra effort.

Just trying to get my head around the options that are available to you...

Medtronic have 3 possibilities

MM640G Predictively tries to protect against lows. I used this model for the past 4 years.

MM670G Has ‘automode’ which helps to predictively protect against both lows and highs. @MrDaibetes uses this model.

MM780G will be launched ‘very very soon‘ (however long that ends up being). It helps protect against both lots and highs with a 2nd generation algorithm and greater flexibility than the MM670G.

To have any of these ‘hybrid closed loop’ functions you need to be using Medtronic’s Guardian G3 sensors, which have replaced their former ‘Enlite’ sensors.

For Tandem

The tslimx2 uses Dexcom G6 sensors in order to offer hybrid closed loop functions.

The default at the moment seems to be ‘Basal IQ’ (which helps protect against lows), but the Tandem can be upgraded and if you go through additional training and get an upgrade code you can download new software into the pump to convert it to ‘Control IQ’ which helps protect against both highs and lows. Once you’ve upgraded, you can’t switch back to ‘basal IQ’.

In my experience any of these algorithms make a HUGE difference. But they only work well if you are careful with giving the pump the information it needs, and (in some cases) keeping adjusting your basal and bolus profile/ratios. The ability of these automated corrections is mostly to smooth out results (and they are *great* at doing that) but they can’t catch everything, and the wobblier my results are at any point, the less effective the algorithms are able to be

Good luck with your choice, and let us know how you get on 🙂
 
Lilmssquirrel said:
Will take on the tip about keeping a diary about this. The previous issue was definitely linked to a pizza we had when we went out. We don't go out often and I'd planned on her having something like chicken and mash but they had pizza on the specials. We've had supermarket pizza without issue, but clearly whatever was in the pizza we had out, it caused her to rocket off the charts
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I have had to give up on Pizza. They just make life very difficult with so many different factors to manage, but they can be sooooooo tasty and tempting.

You are already doing really well and probably don’t even notice all the things that you and your daughter are now doing automatically. The hiccoughs are the things that tend to stick with us as they are the opportunity to find out yet more about this condition.

Take care, and just glad that you have joined us.
 
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