Parent of an 11yo, about to go on pump - any gotchas?

[rowleyd3]

Hi all,

I'm the parent of an 11yo boy, who is about to go on a pump. He was diagnosed in Jan this year, so the last 9months have been a big learning curve for us.

He's very sporty, so we have those added complications, along with being diagnosed Coeliac (yesterday).

I've read loads of stuff, but wondered if there are any gotchas that I should be aware of? Anything you as a user or a parent can call out?

I'll no doubt have a 100 questions over the next few weeks, as he's being shown his pump next week, a saline start from 2 Nov, then starting at the end of Nov!

We're 90% sure he is having a 640g if that helps ...

Thanks,

Darren

 

[CarbsRok]

I've read loads of stuff, but wondered if there are any gotchas that I should be aware of?

You will have to translate what a gotchas is for this old fogey

Do buy the book pumping insulin by John walsh. (Amazon) it's known as the pumpers bible and worth it's weight in gold.

 

[rowleyd3]

You will have to translate what a gotchas is for this old fogey

Do buy the book pumping insulin by John walsh. (Amazon) it's known as the pumpers bible and worth it's weight in gold.

I have just ordered the book.. thanks.

By 'gotchas' I meant: things you wish you'd have known or been told/warned about, things that caught you out or lessons you've learnt over time.

 

[yingtong]

Hi Darren,I've been type1 for over 53 years and started on the Medtronic 640g in May this year,I think it's superb pump,but I might be biased as this is my 1st pump.As you have said that you have ordered the "pumpers bible",I am still learning but I am sure there will be more experienced pumper will give you better advice than I can.I wish your son good luck and a long and heathy life.

 

[azure]

I have just ordered the book.. thanks.

By 'gotchas' I meant: things you wish you'd have known or been told/warned about, things that caught you out or lessons you've learnt over time.

The main thing I wished I'd known is that the sets (the cannula or needle you put in your body) are the weakest link in the whole pump system. So if your son has an unexpected high blood sugar, the problem could very easily be the set being in an area where absorption is poor or just being in not quite right. I think when you first go on the pump, you worry about the pump itself but problems are most often to do with the sets, I've found.

I've had a pump for more than 11 years and I love it

Good luck to your son It takes a while to get into the pump mindset and to get things sorted, but I've found its given me my life back and much more freedom.

 

[noblehead]

I have just ordered the book.. thanks.

By 'gotchas' I meant: things you wish you'd have known or been told/warned about, things that caught you out or lessons you've learnt over time.

I started on a pump back in February and can't think of any 'gotchas', the book that @CarbsRok suggests is a great read and should prepare you and your son for the changeover. Good luck

 

[RuthW]

I've been on a pump for about 9 months now. Things i would advise:

• have a couple of weeks with little physical activity to start off
• make only one change at a time - absolutely vital
• let each change bed in for at least three days, preferably four or five
• get the night time basal rate sorted first
• then the daytime basal rates
• then tighten up the bolus ratios
• concentrate on getting rid of hypos before all else: a few highs can be tolerated at first in oder to stop the 'bouncing'.
• once you've got all that organised, start to look at the effects of exercise.

I know some people say don't change your routine. That is OK if everything IS routine, but my exercise pattern is pretty changeable and I guess that's true for kids too.

But exercise is the factor which is most disruptive for me (and I guess for most kids because of insulin sensitivity). And my first few weeks were roller coaster because I got my pump, then went off to visit my son, who is a busy bee and it was wild swing after wild swing for about a month. In retrospect, I wish I had started the whole process with a little less vigour. It would have been less scary. My more sedate normal routine would have been kinder!

 

[irrationalJohn]

We're 90% sure he is having a 640g if that helps ...

Hmmm. The first question I would have for you is whether or not your son intends to also use Medtronic's CGM (Continuous Glucose Monitoring). If he is, then there is more to say than if he intends to only use the pump without the CGM.

My guess is that you will be getting the "package deal" since the 640G is being marketed by Medtronic as a "system" … a term which is a better fit for this pump than its predecessors. With past pumps the Medtronic CGM was pretty much only a nice extra feature. While Medtronic had integrated the monitoring of their CGM sensor into their pumps, it still was essentially only an important "FYI" for the pump user. The CGM data was available to the person using the pump but was separate from and not used by pump itself.

That changed slightly with Medtronic's Veo aka MiniMed 530G. This is the pump which preceded the MiniMed 640G. It's "big trick" was that if the SG (Sensor Glucose) determined from the CGM sensor dropped below a certain point, the pump would stop delivering basal insulin. Whoo. And. Hoo.

While this was certainly a nice enough feature, speaking for myself, I always thought Medtronic was more impressed by this feature than I ever was. From what I've read … I have no direct experience with a Veo … I do not view the Veo as all that much of an improvement over its predecessor pumps, the Paradigm 523 & 723, which I currently use.

However, Medtronic appears to have (finally!) acted on many of the long standing complaints in the design of the MiniMed 640G. Two biggies which come to mind are that it has a color screen and is waterproof. And the operation of the 640G is also more tightly integrated with their CGM sensor. Instead of merely stopping the delivery of basal insulin after dropping below a cutoff point, the 640G attempts to predict a low glucose level 30 minutes in advance. The goal is to stop the basal delivery.soon enough to avoid, or at least reduce the severity of, hypoglycemia. The 640G will also automagically resume the basal delivery when the SG rises.

From what I have read of the online feedback from people who use the 640G this actually seems to work rather well to help them avoid hypos. No, it's not a panacea and it sure as hell ain't no "artificial pancreas". But it don't suck either.

But in order to use that feature you need to also be using Medtronic's proprietary CGM. So, is this likely to be what your son will do?

 

[rowleyd3]

Thanks for all the info so far ... Very welcome!

The book should be here today, so we'll have a read, our DSN has mentioned about cutting down on exercise for a couple of weeks and useful info that the sets cause most problems....

We are hoping to use CGM, but how it stands, we've been warned it probably won't get funded, so we may have to self-fund. This puts us in a quandary, as I know the MedTronic CGM sensors don't last as long as the DexCom, so will work out much more expensive. However, we're still interested I the predictive stop, as he currently has at least one hypo per day (usually down to 2.4 - 2.8, with no warning signs) which we hope the tuned rates will help with, better than the Lantus that we use to keep him down in the morning, but which drops him low most pre-lunchtimes. Eg yesterday he was 8.5 at 11:00, but dropped to 2.4 by 11:30 ....

So, although it's not too late to change the pump request to say an Animas Vibe and Dexcom G4 setup, we may have to stomach the higher Medtronic costs to get the auto basal stop ..... Having said that, I think (?) the G4 setup can be cloud connected, so that way, we could remotely see his bloods using the Dexcom share and follow apps (is that right?)..... So that could be a massive help (especially if we could get his readings onto an iWatch so he just has to glance at it to get his reading and graph). I love the idea of technology helping him and us ... But I'm also wondering if I'm letting my love of tech and ease of use cloud my judgement. Part of me thinks we should just simplify it, get the rates right and manually do stuff (certainly initially)... but the other half wants to use tech to help.

Decisions, decisions

Thanks again,

Darren

 

[yingtong]

Hi Darren,I was lucky enough to get my CGM funded as I have "Hypo" awareness and I think it a superb piece of technology and it certainly works in my case,it predicts when I am going low and shuts the insulin off and predicts when to switches it back on.

 

[ealingr]

My gotcha would be just giving time to get used to the pump and get all of the settings sorted. There were times at the start when I hated the pump and thought it wasn't right for me, but I quickly became a total convert and now think it is great!

I'd also second the advice to tolerate some highs during the early days, particularly while figuring out how to adjust the basal for exercise. If you set a temporary basal rate of -50% and find sugars rise too much during exercise, it can be fixed with a correction dose immediately and then you can try a temporary basal rate of -40% for the next exercise session. Trial and error, essentially - but it does seem to work. Also, you might need quite different temporary basal rates depending how strenuous the exercise is.

 

[irrationalJohn]

Part of me thinks we should just simplify it, get the rates right and manually do stuff (certainly initially)... but the other half wants to use tech to help.

Ah, the CGM cost dilemma. I suspect that eventually the "powers that be" will be less and less able to decline to fund CGM because the evidence from clinical trials will start coming in proving that using CGM results in lower A1Cs and better all around BG control. This in turn correlates with fewer complications later in life. But at the moment they can still hem & haw & shuffle around claiming "It's not justifiable in your situation.".

My attitude towards CGM shifted rather dramatically from before I used it and after having used it. Initially I thought I'd just use the CGM long enough to get things like my basal rates firmed up. To see what was actually happening with my BGs overnight. I expected to pull back from using it after I was able to "tweak" my numbers. After all, it is so expensive!

I didn't realize how helpfully addictive it can be. I'm not sure I can describe the difference between testing your BG every few hours with a meter versus getting feedback every 5 minutes. There are approaches such a pre-bolusing which are just so much more doable with CGM than without it.

The CGM can also give you more awareness of what I usually describe as "***? BGs". Those times when it unexpectedly goes sideways on you and, dammit!, you know your BG should not be doing this! CGM doesn't prevent that from happening, but it makes it easier to comprehend and cope if/when it does. You can more easily check whether or not a correction bolus has kicked in. Or, in the other direction, if a correction or even just your regular basal rate is unexpectedly dropping your BG like the proverbial rock.

Of course, none of the above helps with your base quandary of how to pay for it. And it glosses over the potential problems you can run into if the CGM goes wonky on you. This can happen, even to Dexcom users, especially at the beginning. All I'm trying to say is that, when it works, CGM is not just a slight tweak. I would class it as a fundamental improvement in quality of life.

But I should emphasize once more that the catch-22 phrase in the above is, "When it works". Unfortunately there is no way which I am aware of to predict in advance what someone's experience with CGM will be like. The only way to know is to try it.

 

[RuthW]

This is a bit of a late response but it just occurred to me that one technique that could be extremely useful for a child on a pump is the "superbolus". I have read that the post-meal bs reading tends to be higher for children, and this high reading is considered "acceptable" by doctors basically because it's harder to avoid in children. But with a pump, you can reduce post-prandial blood sugars to normal range without causing a hypo three or four hours after the bolus. You do this with a super bolus. You look at the basal rate for the next 3 or 4 hours (or however long your insulin action time is), then for that period you set a TBR of 50%. You then set up your bolus using your bolus wizard, with your normal insulin:carb ratio. When you get to the screen where it is suggesting the bolus dose, at that point you ADD the fifty percent that you just took OFF the basal rate.
I'll set out a real-life example. Today my pre-breakfast bs was 5.4. My normal basal rate for the next 4 hours would be 0.6. I set a TBR of 50% for 3 hours so for the next three hours I am receiving only 0.3 per hour as a basal rate. I have subtracted a total of 0.9. I then go to the bolus Wizard, enter my bs 5.4, my carbs, 45g and it recommends 3.9 units. I add the 0.9 subtracted from the basal and administer the dose. I wait 10 minutes or so, eat, and 1:30hr later, my bs is exactly 7.8.
With a child, it may not be possible to do this with the same degree of accuracy, but I am sure it would be a useful tool. I also think an 11-year-old could actually handle this after seeing it a few times. After all, she will see immediately the great benefits of learning decimal places at school!

(Oh, and btw, the reason I go to this effort is because I love my porridge for breakfast, so superbolus is handy for similarly carby meals at other times, too.)

 

[irrationalJohn]

I use a pre-bolus as a way to limit the spike following a meal with a high glycemic index food such as porridge (which I believe is what I would call "oatmeal"?). But a pre-bolus can be tricky to do even with a CGM. I'm not sure I'd recommend it without a CGM and/or for a child. At least not until they felt more comfortable using one.

Here is a link to another description of the superbolus.