CGM-pump or not? + Freestyle Libre

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team1203

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Hello

Our 11 month son has recently been diagnosed with type 1. For the last month we've been getting to grips with finger-pricking, injections and hypos dealt with beakers full of lucazade.

The local hospital has offered us the following pumps and said that it might be possible for us to apply for a CGM sensor in the coming months. The pumps are:

1) Medronic MiniMed 640G
2) Animas Vibe
3) Accu-Chek Insight

We already got to see the Accu-Chek and MiniMed, which both were big (he is a small boy), but especially the MiniMed was huge on him. Due to the size of the pump compared to his size, we would immediately choose the Accu-Chek if there wasn't the issue of it not offering the option to upgrade to a CGM.

Naturally the priority is his safety, but we wanted to ask for experiences on other parent in terms of pumps and the day-to-day care of T1D in kids.

1) How old is your child and how long have they had a pump?
2) If they have a CGM pump, would you recommend it? Do you have experience on a non-CGM pump?
2) Which of the pumps would you recommend?
3) Any alternatives to Lucazade? (We are getting freaked out by ruining his teeth!)

Another subject that we've been mulling over is the use of Freestyle Libre in the care of juvenile diabetes. As it's just been approved to use on children above 4 years of age, are there any families who already have experience with it?
If yes, do you feel that there are advantages against a CGM pump and has it actually reduced the amount of finger pricks you do per day?

Any advice would be appreciated!

Many thanks.
 
If you are offered CGM, I'd definitely accept! The Libre is not a proper CGM - it only gives you readings when you actually scan it, whereas true CGM devices will have alerts and alarms when your son's levels stray outside the boundaries you have set. Also, in the case of the Medtronic 640g, if the CGM detects a low or even predicts a low, it can suspend basal insulin delivery, and resume basal when levels have risen again. Another negative of the Libre is that a huge number of users become sensitive to the adhesive and get really bad skin reactions.

My son got his first pump aged 7 - he is currently 15, and just about to move from the Medtronic Veo to the 640g. Any pump is better than injections, as you can tailor the basal to their exact requirements day and night, can bolus in tiny increments (1/40 of a unit, rather than 1/2 with pens) - very important for little ones- and can manage so much better when faced with the usual childhood bugs etc. We have used the pump both with and without CGM (self funded, so part time) - CGM gives you the best control, no doubt about it, but available sensor insertion sites can be a limiting factor (my son is very slim and can only wear sensors and cannulas on his butt, so sometimes the whole area needs a rest and he can't wear a sensor).

Hypo remedies - they are necessarily sugary unfortunately, so teeth are a worry. Difficult at 11 months, but is there any way he would drink a little water afterward to "rinse" his teeth? Alternatives to lucozade - my son used full-sugar ribena at first (he was diagnosed aged 4), now he often uses glucojuice (comes in handy 15g carb 60ml bottles). If he sucks through a straw it can help avoid contact of the sugary drink with teeth.

Finally, don't be put off by the size of the pumps - there are plenty of pouches/harnesses/pump-backpacks available for toddlers, and they get used to it very quickly.
 
Thank you both for your replies.

We have not been offered a CGM pump straight off, but our consultant says she can apply for a CGM extension later on. We might then get it, or we might not. There is no guarantee on it.

But for us to even be able to apply, we need to choose a pump that can have this feature. Which is the Medtronic one. And it really is absolutely huge on him... Even the doctors admitted that and said that yes, it might be a bit problematic.

For this reason we are really torn on the decision. We could end up choosing the Medtronic without getting the CGM for it, which will then mean that he is stuck with a brick to carry around for the next 4 years, when he could of had the Accu-chek which is a lot more smaller.

Apparently only 70% of the families who receive a NHS funded CGM on their pump end up using it. What really interest us is why the 30% decides not to?

And yes, sites for all this equipment are going to be a problem also, as he is so small...
 
I would get cgm with both arms ! Good luck. Medtronic are one of the world leaders
 
My daughter is 9 1/2 now and got her pump just a week after diagnosis when she was 6. We weren't given a choice and got the Accu Chek Combo which is brilliant, mainly because it comes with a test kit which acts as remote control, you can do pretty much anything without touching the pump at all. It won't connect with CGM though so we are used to just doing finger pricks several times a day and have been managing pretty well with that (last HbA1c last week was 52 / 6.9%).

However we are due for new pump in July so are just starting to think about which one to choose. If the Combo was still available we'd have another of those in an instant, but it isn't and the replacement, the Insight, is not so good, lots of people have been having problems with them (although there are a few who are happy). So I'm now not so keen on that one, daughter would probably still like it because of the remote control, but you need your pump to be reliable don't you! And the more I read about that one the scarier it gets.

So we are going to have to look at the Animas and Medtronic, at first glance we like the Medtronic, but haven't read up on any of them in detail yet. I didn't used to think that we needed a CGM, but having seen children with them I started to feel a bit jealous and would now love daughter to have one! But we have been told that there is virtually no chance that we will get NHS funding for one :(. So if we want one we will have to pay for it ourselves.

Daughter was part of the trial to test the Libre on children (as a result of which they have now licensed it for under 18s) and also wore a CGM for a week just to see what we could learn from it. So she has worn both types and declared last week that even if we choose a compatible pump, she doesn't want a full CGM system, and even if I bought her one she would refuse to wear it! She said the Libre sensor was more comfortable, less conspicuous and won't cause any embarrassing alarms to go off at school (she has major issues with self consciousness and confidence around her diabetes, once a low cartridge alarm went off in assembly and she was really upset about it). I would rather she had a full CGM, for all the reasons mentioned above by others, but it's her diabetes, she's the one who has to cope with it at school, so I feel I have to listen to her opinion.

So we decided that as a) daughter had made up her mind that the Libre is the one she wants, b) we are going to have to self-fund and the Libre is by far the cheaper option, and c) it therefore makes no difference which pump we eventually choose because the Libre is a completely separate system which won't talk to any of them, we might as well take the plunge and order one now. We have only had it a few days but we love it! Daughter loves being able to scan herself, we are already scaling down finger pricks to 2-3 a day instead of 6 or more (have to do finger prick to get BG into pump handset to enable it to work out correction dose, but these also act as useful checks that the sensor is accurate) and I love that fact that you can see whether BG is rising or falling. Also the graph will be immensely useful in helping me to make pump adjustments - I had been trying to work up the enthusiasm to do overnight basal tests for a few months, but now every night is a basal test without me having to do anything! :D

OK so it won't alarm if she is going low, but we have got this far without hypo alarms so I guess we'll continue to manage without them; daughter has pretty good hypo awareness, but if I do want to check her it's so much easier being able to scan rather than finger pricking. It's almost as good as a CGM, you get the same information, you just don't get it fed to you constantly.

I would definitely recommend the Libre; however as your son is too young to have an opinion, if you get offered CGM on the NHS then snap it up instantly!!

Hypo treatments - well they have to be sugary, all you can do is clean teeth afterwards or at least give a drink of water to rinse the mouth out. At the end of the day I'd rather my daughter had rotten teeth than major brain damage caused by an untreated hypo!
 
I had the opportunity of trialling the MM640G last summer. In terms of the options you (might) have, the integrated CGM with Medtronic can actually predictively try to avoid hypoglycaemia.

I found this to be an amazing set-up. And best of all, you can set it to work silently in the background (and overnight) so you don't get 'alarm fatigue'

This might help explain how it works... http://www.everydayupsanddowns.co.uk/2015/07/64-days-with-minimed-640g-ep-3-what-is.html
 
Thank you everyone again for your responses. Especially Sally for your insight on all the different methods you've tried.

We have done a lot of research on all the pump options we have, so do understand how they work and what the features are. We are just looking to get some info on the experiences other parents have had with them and what parts have they found helpful, especially if someone has been dealing with these things such a young child.

Like said, apparently only 70% of families end up using the CGM-feature after the initial excitement over it. This is IMO quite a low number compared to the way people seem to recommend it as a "must have" feature...
 
Well if the CGM part isn't NHS funded - have you considered that they might not be able to afford the ruddy thing?
 
Try joining one of the many Facebook groups for parents of children with diabetes, e.g. CWD Main Group - you're likely to find many more parents on there who have experience of infants on pumps. I don't think you'll find the 30% of fully funded patients who allegedly don't use their CGM (dubious statistic anyway), because people on forums tend to be more motivated to work hard at diabetes management and use all available tools.
 
Trophywench, nope I haven't as the 70% is out of the people who have had it funded by NHS. I do not know the stats outside NHS.
 
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Good luck, I hope you get your CGM, having a constant readout and interaction with your pump has got to be the best way, - but if you can't get one of those then the Libre is an excellent alternative. Yes you have to retrieve the data yourself but that's a small problem, we have had ours less than a week but I'm learning so much and daughter is relishing the ease with which she can check her BG (and having fingers which are not quite so sore!)

Both the Libre and CGM tests we did were blind, we couldn't see the data until afterwards which was a bit boring and didn't allow us to play with the systems properly to see what they can do - daughter moaned and groaned about wearing both types of sensor! - but we are loving having a "live" one now, it's much more useful to see what's going on as it happens - and have had no more complaints about the sensor! I can only think that the people who turn down free CGMs have not fully understood the usefulness of what they do.

Let us know what you get in the end 🙂
 
Thanks Sally and that's excellent news in regards to your girl. Really happy for you guys ☺

And the 30/70% isn't families turning down the CGM. It's families who receive funding for it, get it, use it for x amount of time and then decide that they prefer to have the pump without it. The way they have the statistic is based in do the families who have received CGM stop needing any if the daily/monthly/yearly consumables that go with it, even though they'd have them available.

I guess it's just like some people choose to go down the MDI route, instead of a pump, even when it's being offered to them.
 
I'm pretty gobsmacked. End of that message! LOL

Incidentally - I am definitely NOT a spanner! Just a female - the female whose nearest and dearest has the handle of TrophyCHAP - having the surname Chapman, and being the owner of a curvaceous and beautiful (not to mention the comfy pillion) Sunset Red 4-pot Triumph Trophy !
 
trophywench said:
I'm pretty gobsmacked. End of that message! LOL

Incidentally - I am definitely NOT a spanner! Just a female - the female whose nearest and dearest has the handle of TrophyCHAP - having the surname Chapman, and being the owner of a curvaceous and beautiful (not to mention the comfy pillion) Sunset Red 4-pot Triumph Trophy !
Click to expand...

Gosh!!! My apologies... Had no clue what you were referring to, until went back to look at ny msg. Phone autocorrect fail. Sorry and edited now.
 
Not that you can see, but I was wearing a rather nice midi black suede skirt, with a very decorous slit off centre, black sheer stockings and high heeled court shoes when that photo was taken at a bikers forum birthday bash! Of course the top has a modest neckline too. And I had very short hair.

BUT! - I did think I still looked like a female - even after all those years and though my lady bits are NOT on show !
 
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