To pump or not to pump

[Lilmssquirrel]

Morning

So DD has her first consultant review next week and I want to start talking to them about the option of a pump.

I have a couple of questions for you guys:

1) What questions should I be asking the diabetes team about pumps?
2) I know they'll be able to answer this but am I right in assuming there would be no injections at all as both background and bolus insulin will be delivered by the pump?

TIA x

 

[helli]

1) What questions?
My first questions would be what pumps are available in your area and what are the criteria. There is no point getting your (and your DD) hopes up only to discover the pump you were hoping for is not available. Some areas have a huge choice; others have only one or two.
Then I would ask for recommendations for books/websites/youtube videos to watch for you and your DD. We all learn in different ways but I find I need something I can refer back to.
Finally, I would ask how long the waiting list is. Again, to manage expectations.
2) The pump provides background and bolus. However, pumps can fail. Rarely, but they can fail. This means a pump is not the end to all injections for ever.

 

[Thebearcametoo]

Here (Oxfordshire) they do pump info sessions a few times a year where you get to see and handle different pumps and they talk through the pros and cons of each. If you decide you want one then it can be a little while before it actually happens so do start the conversation.

Funding for pumps for children under 12 is easy on the NHS (here) but think about CGMs and what funding they have for those as that may link into which pump you get (Libre can be funded fairly easily here but not dexcom at the moment so if you’re looking to link to a Tslim or something like that you may need to fund the CGM - if you have already applied for/got your DLA then that may be a way to fund a CGM).

Some kids here have been on pumps for years and so don’t have experience of doing injections so the team here advise that you do injections once a month to keep good practice with it. You will be expected to have kit with you to do injections even if you pump anyway in case anything goes wrong with the pump so you will still have injection pens etc. Some people do a mix of pump most of the time but then a few weeks of injections so you will still have the ability to do basal and bolus insulin with injections if you choose for some of the time.


But yes bolus will be dialled in as usual depending on carbs (your pump with be set to the appropriate ratios and you just need to tell it how many carbs) and there will be background of the same insulin to cover the basal.

 

[Lilmssquirrel]

Thanks 🙂

TBH I'm quite sceptical about getting a pump because of the faff of sleeping with it, how it's carried around for sports and so forth whereas at least with an injection, it's done and dusted and there's nothing in the way.

We have a Libre at the moment which has helped reduce the finger pricks but they don't fund Dexcom.

Hubby is very against any additional expense (we can afford it) and so Dexcom is off the table. He's adamant that if we get DLA it needs to be put away to ensure we're covered for future instances where we will incur additional costs to give her the support she needs rather than 'frittering it away when the Libre is good enough' Same answer when I floated asking about using OmniPod.

Always useful to get insight from people who have real-world experience rather than just the world view of the consultants or the salespeople.

 

[trophywench]

Well the pumps are funded by the NHS so no strain on anyone's budget however stingy they may be LOL - as long as the Libre is working OK and actually reflecting what's happening though I only partially agree with him because if she takes it into her head to run round the school playground for half an hour unexpectedly or has 'sports' lessons at school and goes hypo when neither of you are there, where the Dexcom is integrated with the pump it suspends insulin delivery without anyone telling it to separately, so that's most likely a good idea, rather than school just dialling 999, I'd have imagined?

Hence start asking questions sooner rather than later. You may need to investigate buying jim jams with pockets though! El Pumpo in my bed, freely roams (as we sleep nekkid TMI) and only once in the last 10 years have I become entangled and had to wake husband up to put the light on and sort me out. (Just for info, though, we don't indulge in sexual gymnastics in the dark! and never have. LOL)

 

[helli]

A pump is no faff to sleep with. I was initially told to let it "roam freely in the bed" but decided a pump belt was easier for me as it seemed to roam just under my hip bone. But once I had it tucked up snuggly in the belt, I slept as soundly as I did pre-pump.
As for sport, there are a few options - pump belt, clip it on to bra/top of leggings/etc. or, if your DD experiences falling BG when exercising, it can be removed completely for sport. This is what I do.
Last year I changed to a tubeless pump (OmniPod is too expensive for my CCG so I have Medtrum which I like). This does away with the problems of keeping it under control when exercising or sleeping.

Why are you considering a pump? Does your DD experience DP in the morning or hypos when exercising or ...?

 

[Thebearcametoo]

I think everyone takes their time to get used to the disability aspect of diabetes. When you have a kid running around and living life mostly as normal it can be hard to see what disability is. DLA is there to cover any additional costs compared to her peers. If a CGM that will alert you to hypos is what she needs it’s absolutely the right thing to use the money for (you will get either mid or high range DLA). It may take your husband more time to see that (this is presuming dexcom is right for your daughter anyway). It can help if he’s involved in clinics etc although I know currently that’s not easy.

Just for reference you can only get DLA 3 months after diagnosis but you can get the application form and fill it in before that. Your DSN will give you a covering letter and there are notes online to aid you filling it in. It’s a beast but worth doing.

 

[Sally71]

Advantages of pumps:
1. Basal is much more precise. Instead of long acting insulin, the pump only carries short acting and gives teeny tiny doses every few minutes. The amount it gives can be adjusted by the hour, so you get more when you need it and less when you don’t, rather than with long acting which just works when it works and you can’t do anything about it. The basal doses can also be adjusted in extremely tiny increments, with the result that if you manage to get it set right you should be able to go 24 hours without eating anything and the pump will just keep you ticking along nicely within range the whole time. If you find you are going low or high at the same time every day you can adjust the basal just for that period and leave the rest alone. (Would help with the evening lows you've been having!)

2. Bolus doses are much more precise also, to the nearest 0.1 unit, which is especially good for children who need smaller doses than adults. (In fact my daughter's new one goes to the nearest 0.01, the mind boggles how small that is!)

3. Only one needle every 2-3 days when you change the cannula, the rest of the time you are just pushing buttons to deliver your doses.

4. You can shift the whole basal pattern up or down by a % temporarily, makes dealing with things like exercise and illness much easier.

5. You can extend food boluses over a period of time instead of just whacking them in all at once, helps with dealing with foods which are slow to digest.

6. And if you did happen to get Dexcom with a compatible pump such as T-Slim, which we've just gone on to, it's a complete game changer - hardly any hypos any more as the pump will predict when a hypo is going to happen and turn the basal off until blood sugars start coming up again, I don’t feel that I need to be panicking about trying to adjust things to stop the hypos happening because the pump will look after it, and even the ones that hit hard are usually less severe and the warnings allow the thing to be dealt with earlier before it gets bad.

Disadvantages:
1. It's hard work! Sometimes I feel like I'm constantly fiddling with my daughter's pump settings and never quite manage to get it right. And if I do it lasts all of about 3 days before something changes again.

2. Having to wear it all the time, although I think most people get used to this quite quickly.

3. If the pump fails for any reason and can't alert you, you will go very high very quickly because you have no long acting insulin to back you up. So you have to be testing regularly, and then you'll spot potential problems in time to deal with them before the situation gets dangerous. Easier when you’ve got sensors of some sort and don't have to finger prick all the time! And such problems don’t happen very often, pumps can alert you to most things. You do have to keep pens as backup just in case the pump fails (unlikely but possible).

Yes in a way injections are easier because they are just done and you can forget about it until the next one, I like the fine tuning you can do with a pump though that wouldn’t be possible with injections, and I would find injections very crude by comparison if we had to go back. Pumps don’t suit everyone but I think there are very few people who would willingly change back once they have made the switch.

Hope that helps 🙂

 

[SB2015]

Like others I don’t find the pump any problem in bed. It roams freely and I have long tubing so it never seems to get twisted round me. The only problem I ever have is if it falls out of bed it tugs, but that VERY rarely happens. Without it stuck to me it doesn’t matter which way I sleep, and I am a bit of a wriggler so sleep all ways.

I prefer a pump which is connected by Bluetooth to the handset. That way I clip the pump onto my bra at the start of the day and don’t touch it again until I am getting undressed. I do everything via the handset.

It is a lot of work at the start matching to what you need but then so much more flexible. For sport I just turn it down a bit before and after. Whereas on injections I needed to know at the start of the day if I needed to reduce the basal, or I needed to carb load to get through a class or for a long walk. If I am ill I turn the pump up a bit to match what is needed.

The Bolus for meals can be delivered in a variety of ways. It enables me to have a more varied diet and stay in range. When on pens I would try to deliver a split Bolus but then forget to do the second half. On the pump I just tell it what to do for who long and then leave it to get on with it for me.

I was in very small doses of insulin when I switched to the pump. I was also having dips in BG during the night which were impossible to manage with injected basal insulin. With the pump I can fine tune my basal insulin hour by hour. The end of night hypos for me.

I am about to try a pump with sensors connected, so can’t comment on that as yet. However I know that having tried pumps I would never want to go back to injections. I know who others who just don’t want to ever try a pump.

If your DD has access to sensors and so her management is a lot easier and she has more time in range, she is less likely to develop long term complications, so it would be a very positive use of the DLA now rather than saving it to deal with problems later. With the best management possible now it is possible to make complications a lot less likely.

Some pumps can be linked to the Libre using a Miao Miao transmitter but these are self built. I decided against this and wanted a system that would be supported by the hospital team.

Things are changing so rapidly at present with D tech. We would never have dreamed of the Libre being available on the NHS a few years ago. Pumps that link to sensors with automode are now available. Each pump we have is replaced after four years. It is good route to go down for flexibility and opportunities for future developments, if it suits your DD.

Phew. Time to stop waffling.

 

[Inka]

TBH I'm quite sceptical about getting a pump because of the faff of sleeping with it, how it's carried around for sports and so forth whereas at least with an injection, it's done and dusted and there's nothing in the way.

Ah, I thought like that for years. I imagined a pump as a kind of ball and chain - a huge tie and a constant reminder of the stupid diabetes. But - it’s not like that. It’s not a ball and chain, it’s freedom. I can’t emphasise enough how bl***dy brilliant it is to have the ability to have your basal exactly tuned to your needs. I wasn’t expecting to feel different, but I did. I slept better, I had more energy, I felt better overall.

And far from being a constant reminder of the silly D, I actually forget it and can go about my day like a ‘normal person’.

With the ability to bolus fractions of units, you also get a level of accuracy that helps you feel better too - no rounding up or down, just what you need.

Very importantly, I love the ability to have temporary basal rates - increase it for illness, decrease it for exercise. That really is brilliant, and so easy to do.

In bed, I wear my Hid-In soft belt (which I wear most of the time anyway). I genuinely forget I have a pump. It’s tiny, it’s ‘unfeelable’ when I sleep or go about my day, and it’s invisible under my clothes (I control it with my phone). For sports, I wear the same belt, and for a few sports I simply disconnect the pump (it clicks off the cannula very easily).

My advice would be to watch lots of videos on YouTube of different pumps so you can see them and get a feel for them, look at the pump websites, and as well as the actual pumps, look at the sets and cannulas. That was a big thing for me. No good having a nice pump if you’re stuck with crappy cannulas or a poor choice of options.

None of my children have diabetes (fingers crossed) but if they did, I’d be looking at pumps for sure as they’re the closest thing to a working pancreas. In fact, I’d be panicking until they had one as I’d be worrying about their basal.

(My pump is a DANA RS btw. I chose it because it’s tiny but holds a full 300 units, because I can use my phone to operate it without any extra thing to carry round, because it has very good cannulas, and because it has the option of ‘looping’ more simply than other pumps with Android APS and the appropriate CGM)

Most important question - ask them what pumps are available and how quickly she could get one.

 

[trophywench]

I've had a little hands on 'play' with a T-slim and rep today and I have to say - I liked it quite a lot. I love the skins and the rep had her own (cos yes Katie is T1, pumping with a T-slim herself - she had a Combo first, then an Animas, followed by the T-slim) HID-In soft belt, which is lovely - so well made, so soft yet so comfortingly 'substantial' for the job they're made for. Not sure I'm very keen on their reservoirs though, I need to know how the new T-slim users get on with them - and having to change them so often (only 3 days use that's not very long, can I be bothered to change em that frequently? I already need a new cannula every 2 days but can do 4 or 5 days on the Insight, and was happy to do 6 on the Combo.

If the clinic are as helpful as mine, they'll already own Demo pumps you can play with (including vials of saline you/they can use as pretend insulin) and cannulas with inserters cos as far as I know, all current pumps include inserters, so there's no 'freehand' insertion of them.

 

[Deleted member 27171]

If the clinic are as helpful as mine, they'll already own Demo pumps you can play with (including vials of saline you/they can use as pretend insulin)

Oh yes, this is a very good point - I’d forgotten all about this, my son and I both wore a demo for a week before he moved to the pump, was really helpful way for us both to see how it felt/worked.

 

[trophywench]

Yes Lucy, but my clinic don't yet have a T-slim demo - hence they arranged for me to have my own private showing - and there was also another patient (a chap) doing exactly the same with the other rep! - unless he was actually starting on it.

 

[stephknits]

Lots of great advice on here. Definitely find out which ones are funded in your area Frist, then research them. Lots of us have different pumps on here so can talk about which one they have. If my daughter wasn't 16 and thus old enough to make her own decisions and doesn't want one, I would be snapping their hands off to get one. I love my Omnipod and would never want to go back to injections.

 

[Lilmssquirrel]

Well the pumps are funded by the NHS so no strain on anyone's budget however stingy they may be LOL - as long as the Libre is working OK and actually reflecting what's happening though I only partially agree with him because if she takes it into her head to run round the school playground for half an hour unexpectedly or has 'sports' lessons at school and goes hypo when neither of you are there, where the Dexcom is integrated with the pump it suspends insulin delivery without anyone telling it to separately, so that's most likely a good idea, rather than school just dialling 999, I'd have imagined?

Hence start asking questions sooner rather than later. You may need to investigate buying jim jams with pockets though! El Pumpo in my bed, freely roams (as we sleep nekkid TMI) and only once in the last 10 years have I become entangled and had to wake husband up to put the light on and sort me out. (Just for info, though, we don't indulge in sexual gymnastics in the dark! and never have. LOL)

I first read this post at about 1pm. It's taken me this long to peel my hands away from my eyes in order to reply

Thanks for the tips - particularly around the Dexcom and pyjamas. Deffo need pocket pyjamas as I foresee many mornings where it has become burried under a pile of soft toys (she has a small double and barely fits in it) or lost down the back of the bed :😉

 

[Lilmssquirrel]

Why are you considering a pump? Does your DD experience DP in the morning or hypos when exercising or ...?

I'm a planner. I like to do my research long before making a decision. Or running before I can walk.

DD is quite new to this but we are having problems with night time lows, morning lows (for a while we were getting the DP - she'd be around 5 at bed and 6.5 on waking, but now if she's 5 at bed, she'll hypo around 10pm), a massive lunchtime spike and then she's hypo before tea time. I've had a heated debate with the dietician already about not feeding her too many snacks but despite our best efforts on the basal insulin so far, she just keeps crashing and she's eating probably a third more than she did pre-diagnosis.

I just like to be prepared to start asking the questions so I can then do my research and coach the husband to the right position 🙂

 

[Lilmssquirrel]

Just for reference you can only get DLA 3 months after diagnosis but you can get the application form and fill it in before that. Your DSN will give you a covering letter and there are notes online to aid you filling it in. It’s a beast but worth doing.

Thanks 🙂
Form is all filled in and list of questions about it ready for the meeting next week. Will be submitted as soon as three months is up. I like to be prepared. Should've been a boy scout! (I only found out we were entitled to DLA a couple of days ago)

 

[Lilmssquirrel]

@SB2015 - thank you. That was a really helpful post. I'm way better informed now 🙂

@Inka - like the ball and chain analogy. I was pretty much thinking exactly that. I think I need to see some real, live ones to realise it's not so bad!

@trophywench - thanks for the tip on the demo ones you can trial as well. I didn't want to have to commit to something I'd not test driven. That said, I test drove my new car and I'm still not convinced - so that's going to be a ball and chain for the next few years now with all this D-Tech to fund 😉

 

[Thebearcametoo]

Thanks 🙂
Form is all filled in and list of questions about it ready for the meeting next week. Will be submitted as soon as three months is up. I like to be prepared. Should've been a boy scout! (I only found out we were entitled to DLA a couple of days ago)

Get it in as soon as it’s filled in. They’ll take a while to process it. You won’t get money until the 3 months are up but it will minimise the delay.

 

[SB2015]

Like you I like to do my research. I spent ages researching the possible pumps when I was still a year away from my next pump (changed every four years). When it came to it, I have gone for one that is not yet available in the UK but I am happy to wait for it if necessary.

I got into a bit of stew about choosing the pump but as @everydayupsanddowns pointed out it is only for four years and by then there are loads of other options.

If the t-slim was available in our area I would have looked at that as I think on balance the dexcom sensors seem to get a better press. However as that is not an option I am going for a Minimed 780. It has the Bluetooth connection, and is one of the automode pumps available now.