The Pumpers Thread!

[Northerner]

...Random- but do any of you eat white pasta? I had dinner with the girls last night, cooked by them and we had a white spag with a red wine bolognese sauce. Ice cream for pudding. I estimated, dual waved (sorry I didnt mean to swear) bolused again for the ice cream in the middle of the square (again another random guess). Got home at midnight and tested, 15 at the end of a 3 hour square and didnt correct as I had a lot of insulin on board and had eaten the ice cream much later so expected a peak. 1.5 glasses of white plonko later and woke up 6am for work at 5.4mmols. BINGO! So, turns out a whole load of guessing and no measuring or applying ANY theory whatsoever has turned out a good result. Ive never really got into white pasta....is this the secret? (or is it operating your pump under the influence?). BTW Patricia, ignore Mondays experiment about eating pasta only after the gym, dire BM and clearly I need to get out more...🙄 Back to the drawing board.
...

That paragraph would have been gobbledygook to me a couple of months ago, this time it just made me laugh!

 

[Adrienne]

Hi Adrienne

It's funny isn't it. I don't count the campaigning side of stuff or work on diabetes but you're so right it does take up a lot of time and it is kind of like work, hadn't thought of it till now.

OMG! When i think about it it adds up to a lot! So, by saying i don't work i actually am a secretary for the local children's diabetes group; campaign nationally and locally for better care in Essex for children with diabetes in schools (am now on working party working alongside CC, PCT and other parents now); did the campaign for Change4life this year; did the Artificial Pancreas trial (or rather Rose did!); am working on diagnosis stories with an organisation hoping to highlight better care and lastly did filming for DUK last week. So looking at it, i do think i could do with a break from diabetes?!?!?!

😱

Err hello what about you and Rosie being the trial for the closed loop system, that is a huge biggie and a way forward for so many people.

I think you're terrific and you have had your fair share of shite this year as well and you still carry on.

from the Mutual appreciation society........... !

 

[Adrienne]

***

Random- but do any of you eat white pasta? I had dinner with the girls last night, cooked by them and we had a white spag with a red wine bolognese sauce. Ice cream for pudding. I estimated, dual waved (sorry I didnt mean to swear) bolused again for the ice cream in the middle of the square (again another random guess). Got home at midnight and tested, 15 at the end of a 3 hour square and didnt correct as I had a lot of insulin on board and had eaten the ice cream much later so expected a peak. 1.5 glasses of white plonko later and woke up 6am for work at 5.4mmols. BINGO! So, turns out a whole load of guessing and no measuring or applying ANY theory whatsoever has turned out a good result. Ive never really got into white pasta....is this the secret? (or is it operating your pump under the influence?). BTW Patricia, ignore Mondays experiment about eating pasta only after the gym, dire BM and clearly I need to get out more...🙄 Back to the drawing board.

****



Bev- I love temp basal. how do you find the explanation in the manual? It was Patricia and Adrienne if I remember correctly that encouraged me to give it a shot, although I dont go by percentage, I have set mine up on units and find that approach easier (for me). Good luck. Sounds like you are doing really well hun.

Hiya

We like wholewheat pasta but we eat white pasta too and we don't find it does anything different in Jessica. We have gone back to basics with the dual wave ie 50/50 over 2 hours and so far so good amazingly. No doubt it will change again soon. We are also doing that for rice and that too worked the other day. Again amazing.

Sugarbum you are so right, this diabetes malarky is about guessing sometimes, it is pure trial and error and you can do this on a pump much easier than injections.



Bev - the temp basal, as Sugarbum says is guessing what is right for you. Remember though if you have a small basal, which I think A has, then temps of say 70% and even 50% will do nothing to alter what the basal is. I have to use a lot of 0% just to make any sort of difference. I use % rather than units. That is what we are all told at our hospital. If you just think that 100% is what you are on, 200% is double and 50% is half. So if the basal is 1.0 u at anytime then on a 200% you will be getting 2.0 u, at 50% you will be getting 0.50. At 25% you will be getting 0.25u (I believe as I think you are on the VEO!) and so on.

For PE we never know what she is going to do so if over 14.0 we have to give half of what the pump says it wants to give regardless of IOB (if it wants to give the lot no problem but the IOB may mean nothing so we give half anyway to get insulin the cells). We then see how energetic PE is and generally put on a 0% for an hour. You may find a 50% for 2 hours works or 25% for 1 1/2 hours or 60% for 3 hours etc etc. Again it depends on the amount of basal.

Not sure if that makes sense or not.

 

[Becca]

Err hello what about you and Rosie being the trial for the closed loop system, that is a huge biggie and a way forward for so many people.

I think you're terrific and you have had your fair share of shite this year as well and you still carry on.

from the Mutual appreciation society........... !

Aw thank you 🙂 Much needed lol!

 

[tracey w]

WOW!

A lot of stuff has been going on....


TRACY!🙂
Fantastic to read everything and because I hadnt heard of the roche pump I have googled with what you wrote and have read all about it, with a little jelousy I have to say! Sounds like it is very similar to the US Animas Ping, which I have to say if it were available here in the UK I would be SERIOUSLY interested. I had no idea about this pump so thanks for getting me into a really good read. I am gripped. PLEASE post- you made a ref at the end of one I read about your pump saying you hoped it wasnt boring- I can assure you I am very genuinly interested how you get on with this. This is an excellent feature. Dont get me wrong, I love pumping but my instincts are that the meter control on this is going to be so fantastic for you and I really wish I had that. Im pretty sure I would LOVE it! So excited for you...

Bonus that Roche have good customer care. Pleased to hear that as that is something you should not need to worry about while you have this going on.

I would how ever love to do something criminal to your healthcare team 😡 I am absolutely baffled beyond belief that someone could not get you some saline and instead decided the better option was to torture you by giving you the pump without getting going. Speachless, and to be honest, shocked!

I cannot live without the clip- I hope they get that to you asap, if not I would chase up. I can not imagine it without- it is essential!

Is this pump big? Heavy? I couldnt see the spec. But it is interesting the large reservior and canula being in for 6 days how that works out for you.

Sorry i will stop waffling on Trace, but please do (if you dont mind!) keep us updated- I really hope everything goes ok and any support we can offer please ask. Good luck, and enjoy!

thanks for your support! I was disappointed that i couldnt get started to if im honest, and im not prepared to stick it in a pocket with the tube dangling to nowhere as they wanted. We(there are two of us starting on pump), wouldnt be starting on tue if we hadnt pushed,every date i gave was a problem, we were looking at end of october in the end 😡 And dont even get me started on getting the script for insulin, not achieved that either and been to gp, phoned gp 4 times and left message for dsn to re fax script, sooooo stressful in between working full time!

And am now worrying as have no consumables and wasnt told how to order them, will have to wait for tuesday i guess. The pump was the same size and weight as medronic and animas when i saw them altogether.

Anyway off to chase script again, am off today, I need to make sure i get it today.

 

[Patricia]

Becca, I didn't know you and Rosie were on the trial for the closed loop until your post -- our heroines! We are itching to get involved with all this. I'd be interested to know how it went, seeing as we are in the same clinic...Anyway we saw the JDRF report at the day in April and it looks so promising. Even a closed loop at night would be such a step...

ANYWAY. So much...

Um, Bev re temp basal: I think you're right, and try setting a temp basal after the pe. We've never tried before it to be honest. And Adrienne's point about exactly how much diff various levels make is good to remember...But too, A is very sensitive to insulin it seems to actually quite small adjustments *may* make quite a difference?

Another spanner in works is that it's possible the basal is suddenly a bit out...Keep track of same time today and tomorrow...I can't tell you how many times we've thought it was this or that (bolus, temp basal, slow food) and really the basal has changed because he's changing. SO frustrating, and feels so stupid...So often all these things seem to happen in some weird coincidence, like a red herring...

Sugarbum, good to see you! Re pasta, we are purists. We always have white and none of us can stand the 'other stuff'. Like you, we have done some fairly random things and found them to work surprisingly well. One of them we now have down to a system of sorts, having tried it again last night (spag bol! so good!): back to the 30/70 3 hour dual wave (argh), but we UNDER estimate what we know the carb is by about 20%. We then correct 8 hours later. How wacky does that sound? But for the moment it keeps us from getting up all through the night...

So numbers went like this: before dinner, 4.9. At 3 hours (end of dual wave) 11.3 (a little high, but hey). THEN 2 hours after end of dual wave, 6.6! THEN two and half hours later, seven and a half hours after eating, was right up to 14mmols. FULLY corrected, and woke on 7.7mmols.

We are now convinced that there's a 'double peak' at work, one rise mainly fueled by the sauce, and the second peak coming in not quite sure when (around six hours?), which is most of the pasta. I think we can safely say we know this now, but the problem is how to manage it? This method only gets us up once, but he's still high for at least an hour either side, so it's not ideal at all...

If we understood more clearly how high temp basals worked with him, that would be interesting. But clearly he actually doesn't need much extra insulin at all between the first and second peaks -- indeed, traditionally he has hypo-ed there, and now we can see why -- so a temp basal can't be set from the outset...Which means we will always be up in the night, even if just to set the temp basal going!

The under-estimating of carb for the dual wave just means of course that the 'rest' of it is picked up in the correction later -- but it feels pretty random!

I find the 50/50 two hour thing interesting Adrienne -- glad it's working! I'm thinking this end too that if it's mainly the up front bolus which is of benefit in the three hours of the dual wave, we could do with a higher bolus over a shorter time, thus keeping numbers under 11mmol -- and then put in the other 50% or so starting from five or six hours in?

Oh, who knows!

What happened with your up front bolus Sugarbum, on Monday was it? You said it was NOT the way to go...what happened.

btw completely agree with Lou here: we want to know how you are Tracey! Gripped by another type of pump! yay!

This end just another case in point for the wild and wonderful life that is diabetes: yesterday at exactly the same time as the major high from the day before, E was LOW. Not hypo, but dragged around the 4s for some time. Both days I've traced back through his food and bolus, and there's nothing up there. No exercise different. I mean, HONESTLY!

Two days before that he *was* a little low -- 4 again -- at the same time. So it could be that that's the true number, and needs tweaking! We'll see. Other than that and the 14 from the pasta in the night, all well...

Mand, thanks for asking: feeling more accepting. I just find same-age children conversations hard sometime...Do you?

xxoo

 

[Becca]

Becca, I didn't know you and Rosie were on the trial for the closed loop until your post -- our heroines! We are itching to get involved with all this. I'd be interested to know how it went, seeing as we are in the same clinic...Anyway we saw the JDRF report at the day in April and it looks so promising. Even a closed loop at night would be such a step...

Hi Patricia, Rose did two overnight trials this year. She was an absolute star and we are very proud of her. I was umming and ahhing over whether she would do it - what 6 year old would volunteer to be cannulated?! But she loved it (not the cannulation lol) she loved the attention she got from the nurses and what she was doing. I've got more info if you want it but don't want to bore you...

🙂

 

[Mand]

Gosh! so many posts! But all good stuff! My apologies if i miss anything.

Well, I take my hat off to all you moms who work or who do wonderful work like Adrienne and Becca! Take a bow, moms!

Can i ask a Q as i bit confussed.

We usually bolus after a meal so my son can eat to apetite but i have read that it is better to bolus in advance if poss. I want to try an experiment to test my son's blood an hour then two hours after bolus/eating to compare bolusing before eating and bolusing after eating (are you still with me!!!??).

Today he checked his blood before eating eve meal (4.1) then boused 7.5 for eve meal but took half an hour to eat it. When is one hour after? Is it one hour after bolusing or one hour after finishing eating?????????????

 

[tracey w]

Hi Patricia, Rose did two overnight trials this year. She was an absolute star and we are very proud of her. I was umming and ahhing over whether she would do it - what 6 year old would volunteer to be cannulated?! But she loved it (not the cannulation lol) she loved the attention she got from the nurses and what she was doing. I've got more info if you want it but don't want to bore you...

🙂

I have heard of closed loop system but have no idea what it is? Can anyone explain to me please, thanks

 

[tracey w]

Gosh! so many posts! But all good stuff! My apologies if i miss anything.

Well, I take my hat off to all you moms who work or who do wonderful work like Adrienne and Becca! Take a bow, moms!

Can i ask a Q as i bit confussed.

We usually bolus after a meal so my son can eat to apetite but i have read that it is better to bolus in advance if poss. I want to try an experiment to test my son's blood an hour then two hours after bolus/eating to compare bolusing before eating and bolusing after eating (are you still with me!!!??).

Today he checked his blood before eating eve meal (4.1) then boused 7.5 for eve meal but took half an hour to eat it. When is one hour after? Is it one hour after bolusing or one hour after finishing eating?????????????

personally for me, 1 or 2 hours would be after i finish eating to decide absorbtion of the food, so if i eat a big meal or a couple of courses for example and have bolused before, i would think right thats two hours after food, but my insulin has been active for 2 and a half hours, hope that makes sense.

 

[Adrienne]

I have heard of closed loop system but have no idea what it is? Can anyone explain to me please, thanks

Becca will no doubt go into it in more detail but it is a the next stage really in diabetes care.

At the moment the best thing on the market is the Medtronic Paradigm Real Time (or Veo now of course) in conjunction with the sensor and transmitter. The sensor takes sugar levels every 5 minutes and the transmitter sends the results to the pump so we can see on our pump screen what Jessica is supposed to be. However the sensors take readings from what is called the interstitial blood and is not as accurate as capillary blood from the finger tips (and various other places) so you still have to reply on finger pricks.

The closed loop has the pump and sensor and transmitter. But some clever foreign chappies (I've heard one talk and he is amazing) have written an alogarhythm (spelling) which is a computer programme. So the transmitter no longer talks directly to the pump. Instead it will go via the alogarhythm which will be in a handheld device and it will do some working out. ie if too low then it will talk to the pump about maybe stopping for a bit or lowering the insulin intake. If too high it will tell the pump to increase the insulin etc etc. I don't know what it actually tells the pump, Becca will know this as she has seen it work on the adorable (she really is) Rose.

When we had the session with this clever chap the thing that stuck out for some of us who use sensors already was how can we trust this way of doing it if the sensors are not accurate. On Jessica they are not accurate like finger tests, sometimes they can be way off, we use them as guides and trends. He said that at the moment it works if you are asleep, laying still, not doing anything etc etc and I presume this is why they are doing the tests overnight.

He said they need to make the sensors more reliable. I agree.

One of our other friend's daughters tested them last year I think and she was on Newsround if I remember rightly. I guess Rose must be the second batch of testing as they have maybe tweaked some stuff.

It is so very exciting for us all. This will be our children's future with type 1.

 

[Becca]

I have heard of closed loop system but have no idea what it is? Can anyone explain to me please, thanks

Hi Tracey

Rose took part in the closed loop or Artificial Pancreas Trials, and had to wear a sensor and a different pump.

The sensor talked to the computer and depending on blood levels the computer told the pump to give or reduce insulin. No intervention/button pressing etc...is done (which is very odd!) The big problem is the algorithms and trying to take into everyday events that affect control.

Not sure if that's any help?

 

[Becca]

LOL! My post was too late, and you explained it better lol!!! The other girl you mentioned took part in a 'manual' closed loop (I think!) The sensor spoke to the computer,the computer suggested what to do and then someone intervened and told the pump. The new trial this year looked at closing the loop without any intervention which is what happened with Rose.

 

[tracey w]

Becca will no doubt go into it in more detail but it is a the next stage really in diabetes care.

At the moment the best thing on the market is the Medtronic Paradigm Real Time (or Veo now of course) in conjunction with the sensor and transmitter. The sensor takes sugar levels every 5 minutes and the transmitter sends the results to the pump so we can see on our pump screen what Jessica is supposed to be. However the sensors take readings from what is called the interstitial blood and is not as accurate as capillary blood from the finger tips (and various other places) so you still have to reply on finger pricks.

The closed loop has the pump and sensor and transmitter. But some clever foreign chappies (I've heard one talk and he is amazing) have written an alogarhythm (spelling) which is a computer programme. So the transmitter no longer talks directly to the pump. Instead it will go via the alogarhythm which will be in a handheld device and it will do some working out. ie if too low then it will talk to the pump about maybe stopping for a bit or lowering the insulin intake. If too high it will tell the pump to increase the insulin etc etc. I don't know what it actually tells the pump, Becca will know this as she has seen it work on the adorable (she really is) Rose.

When we had the session with this clever chap the thing that stuck out for some of us who use sensors already was how can we trust this way of doing it if the sensors are not accurate. On Jessica they are not accurate like finger tests, sometimes they can be way off, we use them as guides and trends. He said that at the moment it works if you are asleep, laying still, not doing anything etc etc and I presume this is why they are doing the tests overnight.

He said they need to make the sensors more reliable. I agree.

One of our other friend's daughters tested them last year I think and she was on Newsround if I remember rightly. I guess Rose must be the second batch of testing as they have maybe tweaked some stuff.

It is so very exciting for us all. This will be our children's future with type 1.

thanks for the explanation, sounds good. I guess the key will be when the sensors become accurate. I thought the veo can stop insulin at the moment though if the bg becomes too low?

 

[tracey w]

LOL! My post was too late, and you explained it better lol!!! The other girl you mentioned took part in a 'manual' closed loop (I think!) The sensor spoke to the computer,the computer suggested what to do and then someone intervened and told the pump. The new trial this year looked at closing the loop without any intervention which is what happened with Rose.

thanks for both the replies, i have heard it mentioned but never fully knew what it was, i do now!🙂

 

[Adrienne]

thanks for the explanation, sounds good. I guess the key will be when the sensors become accurate. I thought the veo can stop insulin at the moment though if the bg becomes too low?

Yes you are right. You have to manually set what you think is too low though. They were suggesting 2.6 eek or similar. I would have to set Jessica's at about 5.0 mmol as when the sensor says she is 5.0 she is generally 3.0 ish. The alarms for just being too low are still not loud enough, they didn't increase them in the VEO which is so stupid. BUT if no-one intervenes as they haven't heard the alarms then the pump switches off and that siren is then extremely loud and the whole street can hear it.

 

[Adrienne]

LOL! My post was too late, and you explained it better lol!!! The other girl you mentioned took part in a 'manual' closed loop (I think!) The sensor spoke to the computer,the computer suggested what to do and then someone intervened and told the pump. The new trial this year looked at closing the loop without any intervention which is what happened with Rose.

Sorry Becca. I sat here merrily tying and answer and got over half way and thought Becca can answer this, its her baby but I written so much I just stopped and posted it. Whoops.

I didn't know that about the first trial. I guess they are getting better all the time aren't they. They just need to sort these damn sensors out.

 

[tracey w]

Yes you are right. You have to manually set what you think is too low though. They were suggesting 2.6 eek or similar. I would have to set Jessica's at about 5.0 mmol as when the sensor says she is 5.0 she is generally 3.0 ish. The alarms for just being too low are still not loud enough, they didn't increase them in the VEO which is so stupid. BUT if no-one intervenes as they haven't heard the alarms then the pump switches off and that siren is then extremely loud and the whole street can hear it.

sounds very exciting for the future 🙂

 

[Becca]

Sorry Becca. I sat here merrily tying and answer and got over half way and thought Becca can answer this, its her baby but I written so much I just stopped and posted it. Whoops.

I didn't know that about the first trial. I guess they are getting better all the time aren't they. They just need to sort these damn sensors out.

LOL! Oh no you explained it so much better 🙂

 

[Sugarbum]

Yes you are right. You have to manually set what you think is too low though. They were suggesting 2.6 eek or similar. I would have to set Jessica's at about 5.0 mmol as when the sensor says she is 5.0 she is generally 3.0 ish. The alarms for just being too low are still not loud enough, they didn't increase them in the VEO which is so stupid. BUT if no-one intervenes as they haven't heard the alarms then the pump switches off and that siren is then extremely loud and the whole street can hear it.

Oh Adrienne, that is so true! It must be really hard to hear the alarms in your situation on another person when they arent right next to you....I was extremely disapointed at the alarms on the veo, I couldnt believe it. Sometimes, most of the time actually, I dont hear them, never at work- it simply is too noisey. Out of interest I would be curious to hear what Tracey thinks of the Roche pump alarms when she gets going....