Insulin Pumps

[pregogirl]

Hi there

I am new to this forum.

My four year old son was diagnosised with Type 1 in February this year. It has also been part of his health plan to get him onto an insulin pump.

We've been shown the following pumps and these are the models that are recommended for his age group:-

Medtronic MiniMed Veo
Animas Vibe Insulin Pump

I would be interested to hear of parents experiences of insulin pumps? The advantages, pitfalsls and what they liked particularly about the models their child has.

I would also be interested to hear of parents experience of the Accu-Check Aviva Expert pump - this was the first pump I saw demonstrated, which I was quite impressed by but that is not recommended by my hospital for the age my son is.

I'm quite keen on getting my son onto a pump, but I want to make sure I'm being realistic about what day to day life is like with them.

Thanks so much.

 

[Copepod]

Welcome to the forum, pregogirl. You wrote "health plan", so it doesn't sound like you're in UK, under NHS?

Some aspects of pump suitability relate to customer service, which varies between countries. However, I'm sure that parents will be able to comment on technical usability of various pump models.

 

[pregogirl]

Welcome to the forum, pregogirl. You wrote "health plan", so it doesn't sound like you're in UK, under NHS?
.

Thanks for your quick reply. Yes, we are in the UK, under the NHS. Sorry for confusion over the term "health plan" - I think what I was trying to say was that it was always part of the plan to get my son onto a pump. Our consultant said that is what he wanted to do when he was first diagnosed.

 

[Redkite]

Hi and welcome to the forum 🙂

Glad to hear you have a proactive team and are getting a pump so quickly. My son was also 4 on diagnosis but we had a long fight for a pump (unbelievably they expected him to languish on 2 injections of mixed insulin a day).

There is no reason why a patient of any age can't have any make of pump! I think the pump you are referring to might be the Roche Combo (the Expert is a glucose meter). In many ways this pump has an advantage over the Animas Vibe and the Medtronic Veo, in that it is operated by a remote handset - so your son can be playing or sleeping or whatever, and you can give him a bolus of insulin without needing to disturb him by getting to his pump. It is possible that your hospital recommends the Vibe and Veo because they can be used with integrated glucose sensors (if you can get funding) - whereas for the other pumps you would need a separate standalone CGMS if you wanted sensors. The main advantage of the Vibe is that it is the only waterproof pump (the others have to be taken off for baths and swimming), and the main advantage of the Veo is that (when used with sensors) it has a potentially life-saving "low suspend" function that stops all basal insulin if it detects a hypo.

Going on a pump changed my son's life completely - in fact it gave him his life back, as we couldn't get any kind of control on injections (we had moved on to Lantus and 5-6 injections of novorapid daily) - now we can tailor his basal needs hour by hour, he can eat what he likes and bolus in increments or over a few hours for long-to-digest foods. His a1c dropped from high 7's-8's to 6.9-7.2 on average. It is much harder work than injections, because you have to do more thinking and testing, but it is a fantastic tool and we would never change back. I do get up in the night every night to test him, but again, this is because I have the flexibility with the pump to keep his BGs closer to target.

 

[Sally71]

Hello and welcome to the forum.

My daughter was diagnosed aged 6 and put straight on to the Accu Chek pump. It's the only pump we've ever had so I can't comment on any of the others, but I don't see why they would say that one is ok for your son's age but not another, I thought they were all fairly similar!

Anyway, we love the one we've got. I think the big selling point of the Combo is that the test meter acts as the remote control for the pump. So you do your blood test, enter how many carbs, it will calculate correct insulin dose for the carbs plus correction if blood sugar is high (or even a negative correction if BG is the low end of normal) and then if you're happy it's just a couple of button pushes to send a message to the pump to deliver the insulin. So most of the time there is no need to touch the pump at all or to fish it out from underneath clothing etc. if you're out in public that's even better as people just think you are texting, they don't realise it isn't a phone so you don't get any funny looks!

People worry about losing the handset , but you have to carry a test kit with you all the time, you never hear of people worrying about losing their test kit, and the Combo handset IS your test kit so I din't know why people worry about that. You never hear about people worrying about losing their pens either if they are on MDI! Your son is not old enough to look after his own kit so it would all have to be looked after by you or the adult in charge of him anyway. And if the worst did come to the worst and you lost the handset, you can still do boluses etc directly on the pump, it's just not quite as easy.

Advantages of pumps in general are that you can tailor them to your exact needs, you can vary the basal by the hour so that you can get more when you need it and less when you don't. Which should mean more stable BGs. You can do tricks like extended or multiwave boluses which would be impossible with pens; these are useful for dealing with foods which are slow to digest, or for children's parties which are basically carb overload! You can also set temp basals or adjust boluses by different percentages which can help you to deal with illness (usually more insulin required) or unusual exercise levels (usually less required). With the Combo all the calculations are built in so it does all the hard work for you. Also if you are having a day of high readings you can do as many corrections as you like and you don't have to keep sticking needles in! (The pump takes into account whether there is still active insulin from a previous bolus and will vary the correction amount accordingly.)

The downside is that it can take a very long time to get all the basal, ratios etc set up exactly to what works for you; and then it never stays the same for very long, especially with children who have an annoying habit of growing! So it can be hard work and sometimes the adjustments are almost constantly ongoing. And you will still get those frustrating days when it all goes wrong and you can't work out why, no pump can prevent that!

Then there are the cannulas. On the face of it one needle every 2 or 3 says instead of minimum 4 a day sounds like a great idea; cannula needles are bigger and nastier than the ones on pens though. We had an incident with an insertion that went horribly wrong, which traumatised my poor daughter for about four months. That was a very stressful time but luckily she eventually realised that life would be a lot more pleasant if we got the whole procedure over and done with as quickly as possible with minimum fuss and now things are much better. We are all much more relaxed about it which means we have far fewer failures, it rarely hurts her much and the incident itself was a but of a fluke I think, I very much doubt that anything like that will happen again!

The pumps themselves are very robust, so no need for your son to stop any activities, although for some sports it maybe necessary to remove the pump for his own safety. (when he's a bit older!) It's safe for the pump to be off for up to an hour. The Accu Chek is not waterproof so must always be removed for swimming and baths/showers. It has a key lock so that any inquisitive fingers poking at it can't do any damage. Having to wear it all the time may be seen as a disadvantage but we told our daughter that it would have to be her best friend now and she soon got used to wearing it. Her cannula fell off at the swimming pool once, I didn't have a spare on me so we had to come home to replace it, it's only a 5 minute drive but she was really upset that she couldn't wear her pump!

That's about all I can think of but if you have any specific questions please do ask. I think pumping is a whole different way of thinking from MDI, but even though it's hard work sometimes I wouldn't want it any other way!

 

[Hanmillmum]

Hi and welcome from me too 🙂

My daughter went onto the Medtronic Veo a few months after diagnosis. It was a lot of work and a huge difference to what we had been doing with injections. I had been quite naïve to think it would be smooth sailing and a much better option from the word go - that is the impression the team gave us. It was quite a contrast and it took a while to get the best out of it - I came across a really informative book a couple of months in " Pumping Insulin" by Walsh and Roberts and eventually found this forum too, these helped enormously in getting the best out of it. I would recommend having this book prior to pumping. (I told my team to get it as well 😱)

The Veo has been fine but we have nothing to compare it too, it comes with a handset too but we have never used this. We have been able to use the sensors a couple of times with it and it has been great.

Pumping is more work in terms of testing and making changes to doses and basal requirements but I believe we would be struggling without it, especially through lots of colds and viruses. It is more flexible around eating and activity and I can't see how we could have matched injections to the small doses my daughter needs, even for small corrections which all add toward a better A1c. My daughter has needed extra support at school to manage her pump with being so young - but it works very well.

Good luck with what you decide 🙂

 

[HOBIE]

48yrs of sticking pins in. Pumps are magic. They are all good but I would stick to a pump that your Diabetic nurses know & if there are any complications, they know which buttons to press. Good luck 🙂

 

[trophywench]

One thing I would say (and I'm almost bound to say the Combo because it's mine, and cos of the remote but all pumps are the same but slightly different!) there is a new Combo out in July. It has a smaller reservoir - 200ml I think, whereas the current one has a 300ml reservoir and as a consequence of that extra 300ml, the Roche is currently slightly bigger than the others you mention. The new one is smaller and the remote is thinner and more modern looking.

I really don't know why the Roche doesn't come into it; it makes sense to me to catch a kiddy and do a bloodtest then he can go back to what he was doing, while you complete that, enter the carbs and let the meter/remote work it all out, when it says how much insulin you tell the pump to deliver it, you haven't had to keep him tucked under one arm while you enter his BG on the pump, let the pump work it out and then confirm delivery. He does have to stay within Bluettooth range of the remote though so he can't go down the bottom of the garden, but at least he doesn't have to stand still and not move and just wait. Kids aren't all that good at doing that, are they? LOL

Additionally in October, Novo-Nordisk will be putting prefilled Novorapid cartridges for the Combo into circulation and the pump has been designed to fit them and vice-versa. None of the others have mentioned pre-filled cartridges as yet though presumably they'll all let Roche and Novo Nordisk be the guinea pigs and then spring into action with the other insulin manufacturers not far behind them.

I would not be worried about being a guinea-pig for those two companies - Roche are Swiss and do not leave ANYTHING to chance - it was why my hospital went with them - their products are pretty bomb proof when released into the wild !

 

[pregogirl]

Thank you so much for your replies. It's been so useful hearing about your experiences.

I'm very keen to get my son on a pump - it does seem to offer much more flexibility but it's good to hear some of the experiences you've all had.

My DSN has explained the main reason they recommend the pumps they do is because both can be integrated with a CGM system, whereas the Accu-Check Combo does not However, I'm aware that funding for this is very hard to come by so I'm trying to wrap my head around how important this. Have any of you had experience of CGM - permanent or temporary? Sally71 - has this been an issue with your daughter? Has she ever needed CGM and how have you got around this?

The main reason I'm keen on the Accu-Check is the fact that you only have to touch one piece of equipment, but I'm also not sure if I've underestimated how important CGM is.

 

[Redkite]

Hi Pregogirl, my son has been using CGMS since he got his pump over six years ago, but unfortunately we don't get full time funding. We had to buy the transmitter ourselves (£750 at the time), and sensors cost £55 each (you have to buy boxes of 5 for £275) and last 6 days (some people are able to tolerate leaving them in for longer but their effectiveness and accuracy can't be guaranteed). We could afford this at one time, but my husband left a few years ago, and as a single Mum this is now unaffordable. For the past two years we have been able to get funding for 10 sensors per year, so I use them for important events like exams and sports events, and buy an extra box when I can.

I find them immensely useful and would love for him to wear them full time. Firstly, the real-time information is brilliant, ie. he can pull out his pump and check on the screen where his blood sugars are and whether they are rising or falling, and you can set alarms to alert you if a steep rise or fall is happening - for example, this morning he arrived at school (2 mile uphill walk) and his pump alarm went off, saying it had detected he was dropping rapidly. So he tested and found he was only 4.1 and was able to treat himself and get on with his day - his next scheduled BG test would have been 10.45, so without this alert he would have been hypo in the middle of his first lesson. It is also good to have the alarms and alerts overnight, as he does not wake when hypo, and I therefore have to get up and test his BG at couple of times each night. The sensor can be set so that if it detects a low hypo, it will alarm and suspend insulin delivery (we have the Veo, this can't be done with the Vibe) - this is potentially life saving in the event of undetected nighttime hypoglycaemia.

Secondly, you can download the sensor data to your PC and review the results to help make changes to your insulin regime. There are various reports, but the most useful are the sensor overlays, which show several day's results superimposed - making it very clear if there is a particular time of day where he is always higher or always lower. It also gives pie charts of how much time out of every 24 hours he is in range, hypo, or high. I find that he will start of the week with a sensor in being 40-50% in range, then after a few days with the sensor,this improves to 60-70% in range. We get a1c's in the range 6.9-7.2, but people I know with children on full time sensors manage to achieve a1c's in the low 6's because with the help of the sensor they can keep consistently over 70% in range. I just know we could achieve these results too if only we could be given the tools to do so, ie sensors! Frustrating and manifestly unfair 😡

So....if you are offered sensors, bite their hand off!!! 🙂

 

[Sally71]

Hi pregogirl

To be honest I've never even considered trying a CGM, we manage perfectly well just with testing and the DSN is pleased with us and obviously thinks things are stable enough. I believe the CGMs have alarms on whether you go high or low, so as long as that is loud enough to wake us up if necessary then it wouldn't bother me if it didn't integrate with the pump. Given my daughter's recent lows at night a CGM might be useful I suppose; but for reasons which are far too long and boring to explain here I've got into very bad habits and rarely go to bed before 2am anyway; so it's no major hassle for me to do a test when I go up to bed. Daughter doesn't seem to notice me pricking her fingers when she's asleep!

I can't imagine not having a remote control for the pump, amd really love the fact that the Combo blood test kit is its handset, so you can do blood test, bolus wizard works out dose and then two more button pushes on the test kit will deliver the dose - so easy. If I had to do blood test and bolus wizard on one machine and then manually enter that information into the pump itself (which would involve ferreting it out from under clothes etc) I would consider that a major backwards step, even if it did mean that I could then have an integrated CGM if I wanted one.

Roll on the day when someone invents a pump that will do both!

 

[pregogirl]

Thank you so much for all your replies. So much to think about! We have a little bit more time before making the decision, so this is all good food for thought.

 

[HOBIE]

Hope you are sorted now but would just like to say that I am off to a couple of hours do tomorrow about Medtronic pumps. They are giving us more info etc & will be talking to others who are new to the pump. They are a sound firm who care about there patients. Will let you know how it goes 🙂