Insulin Pumps and how do you get one?

robinph

All sorts of wrong tonight.
Well it could have been worse, but I was just a bit lucky with the timing.

Went out for my first run since getting the pump running with insulin, but decided I was safest to go with my club rather than on my own. I had some food a couple of hours before hand as per usual, but I reduced the bolus amount from what the pump suggested. I then reduced the basal to -30% from an hour before I was to go for the run.

Tested just before and was at 9.6. Previously I would have possibly taken an energy gel at that level just before gunning, but decided not to today as I was turning the insulin down instead. The run itself was fine, although I think i was imagining a feeling of the set moving.
Finished and I went straight off to do another test, wasn't feeling obviously low, but it's never too easy to gauge when running. Test was 2.6. :eek:

Good job they didn't send us out for another lap.

I think it could be a combination of not having reduced the insulin bolus beforehand by enough, and maybe the basal setting as well. Will have to do some runs without having eaten during the previous 4 hours to figure that one out I guess. If I need to do that all the time though then it will mean some very early starts on some race mornings.

Alanstrainor

I don't run, but i do cycle, and if im going to be heading out for a vigorous cycle i'd probably suspend my pump all together tbh. This depends on how long you'd be heading out for of course, but if it was an hour or so i'd suspend. It'll be hit and miss, so it's worth trying different things, even if it means you'll get some higher readings.

I've never really done the whole, reduce my basal an hour before going out, i'd probably just take a glass of lucozade, before i head off to give my sugars a bump, as well as having eaten something substantial before.

raisinette

My daughter 'C' (age 10) was dx'd at the end of last summer (2010). We've been working hard to take control on her numbers but a1c was 8.7 last Jan '11. 'C' has been on board with it all since Day 1 giving 3xNovo and 1xLantus all by herself and BG'ing 6-8 time a day, even at school.
She's had a tough time even having to change school due to bullying at the same time as her dx. Last month she was dx'd with Coeliac's disease (they forgot to do the necessary blood tests). She's had a tough time but reads everything she can get her hands on about 'the diabetes' (as she calls it!).
Her BG numbers vary wildly - recently she's been pushing high teens regularly and we can't get it down. Before that we reduced her 30 day averages from 11.4 to 9.4 in the space of 2 months. Just when we think we're making progress, we lose control again. It can be disheartening and difficult to hide from 'C' as she's so engaged with her illness. We haven't fully begun the coeliac's diet yet partly because we're awaiting the results of the endoscopy, partly because we're learning the new diet but partly because it makes it too 'real'.
Since early on, 'C' has talked about the 'pump' and has read/watch videos about infusion sets, boluses, basal rates etc. and is really clued in. In the beginning we rejected the idea of being 'tethered' but as we have learned more, we feel it is her best chance. We've learned a lot - we carb count everything ('C' will nearly know as much), work with G.I. numbers, insulin to carb ratios (though her meals are strictly counted anyway), account for exercise etc. - there's little that I feel we haven't tried to lock down.
Our regional hospital agrees and have been happy to refer us to Crumlin and we're for our first appt. in the next few weeks. They feel she'd be a great candidate for the pump though I don't know if that is conveyed to our new doc. I'm afraid that we'll come across as people desperate for a 'silver bullet' or cure and think a pump will solve all. Or that we're just 'tired' of injecting. It's none of those things - 'C' is so geared up (not encouraged by us) about the pump and is really bright for her age so I feel able to handle the complexities involved. I'm afraid that all her hopes will be dashed by her new doctor.
I'm wondering if anyone has advice about how we should handle this first appt. and how realistic our goal of a pump might be. Or is a 'cocktail' MDI more realistic. It seems to us that 3xNovo just doesn't work unless 'C' reduces to 3 meals a day and no snacks which strikes us as very unfair for a child - or 6 injections a day. Or does having Coeliac factor into the decision around a pump. Any help would be really welcome (first-time poster),

Thanks 'R'

robinph

I've not been on the pump long enough to say how much of an improvement to my HBA1c levels it will give me. I can say that the "being attached" is really not as much of an issue as you imagine it will be before hand, although until three weeks ago I wasn't believing others on here who may have said that same thing.

To get approval you will need to show that you can do the likes of carb counting, very regular testing and understand the technicalities of the pump. Not sure at what age they would expect a child to be dealing with the pump fully themselves, but sounds like your daughter is eager to learn and that has to help.

robinph

I do like what they call the "insulin on board" or IOB on the Animas pump. I've probably not got it set quite right just yet, but just with the default setting it seems to keep good track of how much insulin it calculates I still have floating around my system since the last bolus. Means that if you do a BG test and it is a bit high, so you feed that into the pump for a correction bolus, but because it knows exactly what you had for your last bolus and how long ago it was and how much effect each unit of insulin will have on your BG it then uses that to figure out if you are actually in need of more to correct that current high.

No chance of giving unneeded corrections, but even better is that because I don't have to inject I'm not bothered about taking an extra shot for a correction anyway. Just press a button or two and it's done.

Alanstrainor

robinph wrote: »

I do like what they call the "insulin on board" or IOB on the Animas pump. I've probably not got it set quite right just yet, but just with the default setting it seems to keep good track of how much insulin it calculates I still have floating around my system since the last bolus. Means that if you do a BG test and it is a bit high, so you feed that into the pump for a correction bolus, but because it knows exactly what you had for your last bolus and how long ago it was and how much effect each unit of insulin will have on your BG it then uses that to figure out if you are actually in need of more to correct that current high.

That's awesome. I wish my pump did that!

graflynn

raisinette wrote: »

My daughter 'C' (age 10) was dx'd at the end of last summer (2010). We've been working hard to take control on her numbers but a1c was 8.7 last Jan '11. 'C' has been on board with it all since Day 1 giving 3xNovo and 1xLantus all by herself and BG'ing 6-8 time a day, even at school.
She's had a tough time even having to change school due to bullying at the same time as her dx. Last month she was dx'd with Coeliac's disease (they forgot to do the necessary blood tests). She's had a tough time but reads everything she can get her hands on about 'the diabetes' (as she calls it!).
Her BG numbers vary wildly - recently she's been pushing high teens regularly and we can't get it down. Before that we reduced her 30 day averages from 11.4 to 9.4 in the space of 2 months. Just when we think we're making progress, we lose control again. It can be disheartening and difficult to hide from 'C' as she's so engaged with her illness. We haven't fully begun the coeliac's diet yet partly because we're awaiting the results of the endoscopy, partly because we're learning the new diet but partly because it makes it too 'real'.
Since early on, 'C' has talked about the 'pump' and has read/watch videos about infusion sets, boluses, basal rates etc. and is really clued in. In the beginning we rejected the idea of being 'tethered' but as we have learned more, we feel it is her best chance. We've learned a lot - we carb count everything ('C' will nearly know as much), work with G.I. numbers, insulin to carb ratios (though her meals are strictly counted anyway), account for exercise etc. - there's little that I feel we haven't tried to lock down.
Our regional hospital agrees and have been happy to refer us to Crumlin and we're for our first appt. in the next few weeks. They feel she'd be a great candidate for the pump though I don't know if that is conveyed to our new doc. I'm afraid that we'll come across as people desperate for a 'silver bullet' or cure and think a pump will solve all. Or that we're just 'tired' of injecting. It's none of those things - 'C' is so geared up (not encouraged by us) about the pump and is really bright for her age so I feel able to handle the complexities involved. I'm afraid that all her hopes will be dashed by her new doctor.
I'm wondering if anyone has advice about how we should handle this first appt. and how realistic our goal of a pump might be. Or is a 'cocktail' MDI more realistic. It seems to us that 3xNovo just doesn't work unless 'C' reduces to 3 meals a day and no snacks which strikes us as very unfair for a child - or 6 injections a day. Or does having Coeliac factor into the decision around a pump. Any help would be really welcome (first-time poster),

Thanks 'R'

You'll get there! It is frustrating when you're doing so much work and not seeing the rewards but if sounds like your daughter and your family are the perfect candidates for a pump.

There is an insulin Pump information evening on in Limerick this coming Monday (14th March) and I know that some of the parents attending will have experience of Crumblin hospital because Limerick seems to practice "shared care" with them.

I don't know if that's anywhere near where you live but there are other parents groups around the country that you can contact for this kind of information too. The Diabetes Federation have all their contact details and some of them have facebook pages.

Regards,
Grainne.
Person w/T1 for 17 years and a parent.

darlingdotty

Hi there Raisinette!

My daughter was diagnosed with T1 in December just gone, and then Coeliac disease in January, she's 7.
We are also with a regional hospital and we self-referred (along with our GP) to Crumlin.
Her readings are all over the place, we could have a few good days and then readings so off the wall is awful. The diabetic nurses in the regional hospital were advising us to pump more insulin in, increase snacks, so much so, my daughter never felt hungry anymore.

Anyway, on our last visit to our regular hospital, we once again referred to the pump. We got immediate positive feedback saying they thought our daughter would be a great candidate etc.
I have been carb counting from the start, have previous knowledge of T1, on a total gluten free diet etc.

We then had our visit to Crumlin, who have changed the whole system. We have been feeding the insulin, so we had to give her so much food so she wouldn't go hypo, even 10 mins late with lunch would bring her down.
It has also been noted that because of her early diagnosis, she is still honeymooning and does not need insulin throughout the night.
She's now on 2.5 Insulatard in the moring and a shot of Novorapid for dinner in the evening and she still wakes up with a 5. She now eats what she wants and as much as she wants and more importantly, when she wants.
Her first Hba1c was 8.5, excellent apparantly on a newbie.
As regards to pump, they were not so eager to put her on this.
We were also told the coeliac diet would not help the BS level, there is no link to the GF food and good BS.

In saying all that, she is on the list for a pump in our local hospital (I suspect in about a year).
I was very positive about carb counting and pumps until we spoke with Crumlin, who have now shown us that two injections a day and eating what she likes for the meantime while on honeymoon is almost better than a pump, for the time being anyway.
Now I'm much more relaxed about the whole thing and not in such a hurry to go pumping now.

raisinette

Darlingdotty,
thanks for the detailed reply, really helpful. I can see how they are factoring in the continuing honeymooning and how perhaps your daughter isn't as insulin dependent as ours just yet. For example, we forgot 'C''s long-acting (Lantus) one night and she woke on >20! She's on about 20units in total now. Her meals (and ideally snacks) need to be covered by Novo which is very restrictive for her so the 1 Insulatard + 1 Novo sounds like a much better regime, though we'll hear if that would work for 'C'.
Our local hospital isn't going down the pump route at all and it seems the 3 Novo+1 Lantus is the 'best' solution for her age (they say) though we don't find all that many on that regime. Well done on the prompt referral - our first appt. was almost 8 mths away (referred thru local ped dr.) though we got a cancellation for March. I'd love to talk more sometime if you'd like to PM me.
Thanks for all the support and to RobinPH and GraFlynn for their help.

CramCycle

raisinette wrote: »

3 Novo+1 Lantus is the 'best' solution for her age (they say)

I would be more of the 1 lantus + "x" novo where x = no. of meals a day, If she is eating 4 meals a day then she will pry want to be on 4 shots a day. They may have said 3 x Novo on the basis they think that is all she is having. It seems to be accepted that people only have 3 a day by doctors/nurses but everyone I know has pry 4 a day.

You mention 6 a day but that really depends on the size of the snacks, time from last injection etc. If a snack is close to a meal in carb content then insulin is needed but if its only a tiny amount and there aren't many of them (eg 10g/snack) it might not be. It varies from person to person, level of activity but you should probably discuss with the clinic about being more flexible with her regime.

As I'm sure you'll learn from here, everyones regime is different and it can take awhile to learn what works for your child best but don't get to disheartened, it takes time to get the routine and adjustment right, experience works best and unfortunately you don't get that till you make a few mistakes.

My only advice is don't make too many changes too quickly, make one and then give it 2/3 days to settle, at the very least (provided no hypos are observed). From experience with other families with Diabetes, kids often deal with it far better than their parents, and learn far quicker. If she is as interested as you say, you will certainly find that what ever knowledge she has over you in the area will grow as time goes by, in a few years her opinion will be worth as much if not more than her doctors

Also Crumlin is an excellent clinic, I hope Maire and Nell are still there as they were fantastic when I was a kid, straight talking, no messing and far more well versed than any of the clinicians I have ever met It's worth going to Crumlin if only to give your child a half hour meeting with those two every 3 months.

ZAVJIK

Anyone know of a good reason not to try swimming with an Animas waterproof Insulin Pump? My child has an Insulin pump for the last year but they haven't tried swimming with it yet. Even though its supposed to be fine, just wondered what's the worst that could happen?

robinph

I wasn't quite sure if I was imagining it or not, bit after seeing a comment on another forum I don't think I am...
Did your awareness of hypos coming on change when starting on the pump? A reason I saw suggested elsewhere was that the bg levels don't change as rapidly on the pump so it might make them a bit less obvious. I think that may be what is happening with me as I've had some lows where I felt a bit odd, but none of the same sweating for example that I'd have had for similar bg levels previously.

robinph

The Animas is meant to be waterproof to something daft like 3meters for 24 hours, but quite what you'd be doing there for that long I don't know. The worst that would happen is it falls off and goes to the bottom of the sea. But if in a pool I'm sure someone could be found to fetch it from the bottom.

If attached though I can't see a problem except getting tangled up with other kids arms flailing about. It might be an ides to disconnect for the duration anyway as the basal rate may want changing for exercise but I'm still experimenting with all that stuff myself so am not sure what best to suggest.

The main thing that the Animas Rep said to us regarding the waterproofing was that the battery cap would be replaced with every other batter replacement and to ensure you had it fitted correctly, you shouldn't be able to see the yellow ring around it.

graflynn

I have an animas pump and have been swimming a number of times, both in pools and the beach. I have never had any issues with it with the tubing either.

graflynn

robinph wrote: »

I wasn't quite sure if I was imagining it or not, bit after seeing a comment on another forum I don't think I am...
Did your awareness of hypos coming on change when starting on the pump? A reason I saw suggested elsewhere was that the bg levels don't change as rapidly on the pump so it might make them a bit less obvious. I think that may be what is happening with me as I've had some lows where I felt a bit odd, but none of the same sweating for example that I'd have had for similar bg levels previously.

My sensitivity to hypos didn't change at all but because of the pump I can usually head them off. And what I mean by that is if I underestimate how much carb I have on a plate and my bg levels hit 5mmols. I know that a hypo is pending by the next meal so I can reduce my basal insulin temporarily.

However, I've noticed that since being on the pump I'm definately more sensitive to the highs. If my readings go over 10mmols I actually feel slightly nausous and I feel that's a good thing. When I was on injections I never felt the highs at all.

ZAVJIK

graflynn wrote: »

I have an animas pump and have been swimming a number of times, both in pools and the beach. I have never had any issues with it with the tubing either.

Thanks for replies to both yourself and robinph. First time poster to this so forgive me if I am lacking the appropriate etiquette. Its nice to know there are others out there who have attempted this and all went well.

When we last went to the beach, took off the pump for the duration near the water but found it a nightmare trying to keep the sand off it. Even though we had a belt and pump bag for holding it.

Taking the pump off used to drop his sugars initially (it seems to go the other direction now) so we would like to leave the pump on for his next outing in a pool. Planning first holiday abroad using the pump soon, so worried how it will all pan out, so will be trying an indoor pool before then. Also, have heard it can be hard to keep the infusion site attached with salty sea water too. Rep recommended special wipes that are supposed to help give a bit more adhesion to the site. Hopefully they will work.

robinph

I was getting a bit of mild itchiness from the glue on the canula I think, and was a bit red after taking them off. They gave me some Skin-Tac wipes which I use before putting the canula in and it adds a slight barrier between the skin so I've not had the itchiness since. It is very sticky though so my tshirt then gets stuck to me a bit initially if it's not dried out first, and handling the canula firing thing is a bit tricky with one hand covered in the extra sticky stuff from that wipe.

I've not had any problem with the canulas coming off before time though after getting sweaty from running and showering they stay firmly stuck

I've also then got some other wipes that call themselves Uni-Solve and a quick dab with them around the canula and they virtually fall off.

Next time your ordering your supplies it might be worth asking about if you can get them delivered as well.

For the beach I'd expect the biggest issue if you take the pump off to actually be sand getting in the fitting of the plastic. In the boxes of new canulas I get there are a couple of plastic clips to use to cover the canula when you've not got the cable attached so fitting one of those would stop sand getting in. Not that sand would get into the actual tubing, but if it get around the fitting then they won't clip back together snugly.


Edit: Other thing if you are going abroad and have an Animas pump, I believe if you let them know they will send you a spare sealed pump to take with you just so that you are covered if something does go wrong with it.

ZAVJIK

Thanks again. We had heard that the canula could be dislodged due to the sea water and were recommended those wipes. Was more worried about the pump itself getting damaged from water or more specifically sea water while swimming. Have used the covers you mentioned and they are great for when the pump is removed. Would be nice to try to keep it on though, if thats possible.

Must see if I can get those Uni solve wipes you mention. Don't think we've tried them. Have been using baby oil up to now to help loosen the canula. Usually rub on a Natural Antiseptic on the last site after changing the site to help prevent any infection. I think its some sort of tea tree antiseptic cream.

robinph

I got some baby oil to see if that would help with the removal, but the next day my box of supplies appeared so I never actually tried it out.

Out of interest, how long are peoples previous cannula sites remaining visible for? They are not infected or anything, but I can still see the last 2 sites, possibly 3 if I could remember where it was. But will be changing set again tomorrow so thought they might have cleared up a bit quicker.

Will have to investigate in Boots for some antiseptic something next time I'm there.

Alanstrainor

robinph wrote: »

I got some baby oil to see if that would help with the removal, but the next day my box of supplies appeared so I never actually tried it out.

Out of interest, how long are peoples previous cannula sites remaining visible for? They are not infected or anything, but I can still see the last 2 sites, possibly 3 if I could remember where it was. But will be changing set again tomorrow so thought they might have cleared up a bit quicker.

Will have to investigate in Boots for some antiseptic something next time I'm there.

My sites remain visible for ages. No joke I can still just about make out sites from about 2 months ago on my stomach! (They must have been bad ones though).
I'd say 3 to 4 weeks is how long mine last. I don't use any creams on them though so that could be the reason.

eilo1

Mine stay visible for a few weeks as well, but Im really lazy about changing the sites. I will leave them in for 4-6 days some times.

Annoyingly I got a spray tan the other week for a ball and there must have been some residue left from the old sites. The tan was all blotchy on the old sites even though they had healed and were not visible before the tan was applied. I was not a happy bunny :mad:

robinph

Guess I'm doing ok then. Spray tans are not an issue for me at least and it is probably usefully in making sure you don't hit that eaxct same spot too regularly.

robinph

Can't believe it's only been a month, feels like I've been doing this much longer.

Did another nights testing of fasting and getting up every two hours last night, apart from being starving, wanting to go back to bed, and now dreaming of a bacon and egg McMuffin at 10am... I'm pretty happy with these numbers:

Starting from 8pm, then every two hours: 6.5, 5.6, 6.4, 6.1, 6.1, 7.7, 7.4

I had adjusted the basal down a touch from the default setting they started us on during the hours of 00am - 6am based on a partially complete basal test a few weeks back. Looks like I may need to up the basal a touch from 4am, but those numbers are pretty level.

I've to go back for the pump clinic again on Monday, and I'm running another race on Sunday, so I'm going to leave changing anything else until then now.

robinph

Just been through my first metal detector since getting the pump. I was actually the first person through that lane as they just opened up an extra one, I then walk through and all the alarms go off, I lift up my shirt to show the guy the pump, he knows what it is. But he then had a complete brain fade and forgets what he's supposed to do next.

Never any suspicion over it, just I think me being his first customer of the day was possibly not fair on him.

Now the flight is delayed though so have to try and keep away from the airport bar.

CramCycle

robinph wrote: »

Now the flight is delayed though so have to try and keep away from the airport bar.

I don't get your logic :pac:

robinph

There must be something uneven about the way that I walk, as whenever I've got the pump attached on the right hand side of my trousers I have far more incidents of it falling off. Happened three times today, admitedly not quite a normal day with general faffing about, but it gets annoying. Have to experiment with attaching it to different belt loops or something, but then I'll end up sitting on it instead.

CramCycle wrote: »

I don't get your logic :pac:

I fairness the whole reason for me being in the airport is so that I can get to Ireland for a weekend on the beers in various places.

robinph

The last week my BG numbers have been way out of line. The boluses are getting me back into range correctly, just the basals must be way off and the BG has just been constantly rising whenever there is no bolus still in action. It's also been causing issues when I apply a temporary basal during running and the BG again shoots up.

For example the basal levels I have, and were working fine until last week, last night had me going from a BG of 8.8 at 10pm to 16.0 at 8am. Pretty constant rise by the looks of it through the night, except for me sleeping through one of the 2hr alarms I had set on the phone for the purposes of testing through the night.

Made a change to the overnight basals now, but from the numbers I got last night I think I'll need to change it again. Shouldn't be changing more than one thing at once though so will have to do another sleepless night to get that sorted. Have to pick a day to fast and test as well now and try and get those basal setting back in line with what I need.



There is a lot of things to tweak with a pump and extra things to get your head round. I'm still in no doubt that it's the way forward though, if for no other reason that I can make such changes so simply.

robinph

Went and picked up a takeawy on the way home today, ate, bolused the appropriate amount based on the claimed content on the web, tested again a few hours later, up at 11.8, put the number in the pump to give a correction bolus before bed.

Pump says no, you've still got plenty of insulin floating around your system from the bolus earlier and said I didn't need anything.

That "insulin on board" feature of the pump is fantastic.

darlingdotty

robinph wrote: »

Went and picked up a takeawy on the way home today, ate, bolused the appropriate amount based on the claimed content on the web, tested again a few hours later, up at 11.8, put the number in the pump to give a correction bolus before bed.

Pump says no, you've still got plenty of insulin floating around your system from the bolus earlier and said I didn't need anything.

That "insulin on board" feature of the pump is fantastic.

That's very encouraging to hear! Thanks for the update!

My daughter's readings have become erratic as of late and no matter how I try to count the carbs and limit food (impossible with an 8 year old), we're still either getting lots of highs or lots of lows, days where she eats the same and has the same activity will never give us a constant BS level. We did have a month where everything was ok, but now it's gone again.

We are still being told she is on 'honeymoon' and looks like she will be for a while, until then they won't consider her for a pump. I'm also doubting how the whole carrying the pump around will be good for her. She hides when she has to do her BS, and with so many activities I fear it would hinder her.

Do those of you with pumps think they may be suited to teenage kids rather than younger ones? I've read on the UK boards that the kids love their pumps, but I'm not so sure....

robinph

In my limited, and old bloke, experience of having a pump I reckon they would be good for kids. I had a chat with a teenage boy who lives near my parents before going on one myself and he seemed delighted with it. There is an Accucheck pump which comes with a remote, so you can hide the pump somewhere about your person, and then just control the boluses etc remotely. Have seen comments on other boards from parents of younger kids who use that to "zap" the kid from a distance whenever they eat.

The flexibility that the pump gives you is fantastic and although I'm still learning how to work it into what I do I'd not be switching back to injections. This way of getting insulin into me is just sooooo much better than anything else. Unless she's playing full contact rugby then a pump would probably help with any activities as well as you can just change the temporary basal setting for the duration of increased activity and reduce the need to start out high or risk of going low due to exerscise.

You do need to be motivated to want to take control of diabetes though, and it is certainly not simpler than injections.