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Ready to throw pump out the window

Shell1

Shell1

Well-Known Member
Messages
388
Location
Manchester
Type of diabetes
Parent
Treatment type
Pump
So bloody frustrated the 2 weeks of chloe being on pump has been a complete nightmare her bloods are all over the place ive changed ratios basal settings nothing's working her bloods are 18 they've shot up from 10 since half 7 ive primed it checked her site but nothing new its like this most the time now from a normal reading to a crazy ass one from nothing.feel like giving up on the pump its so hard going ,only thing stopping me is the constant injection that she hated having .i feel now we had better control in injection .i loved the pump at the beginning ,perfect bloods but its now going downhill .i just need to get it off my chest im totally stressed out with it


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No shes fine i thought that at first but no shes fine thats why its so frustrating .shes fast asleep now and im sat up worrying .its the damage these high are doing which is upsetting me as no matter what ive done nothings fixing them at the moment .


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Do you still have her pens? You could maybe try taking her off the pump for 12-24 hours, give her some long acting insulin so she has some in her system and use short acting to bring her levels back to normal and then reconnect the pump? If you're really worried call 111 but try not to worry about any damage highs can cause, we all have them, and it takes a long time of consistently high levels to cause long term damage. As long as her breathings ok and she doesn't have ketones (hoping you have a ketone meter and test strips?) then don't panic too much. :)
 
What pump is she on? could you get the CGM? Might be worth it if you could self fund for your piece of mind if nothing else....
 
Its really very common to be over the moon with a pump in the first few weeks BUT then after achusting the basal rates to be what is thought to be correct, get good control, pumpers then find that bg levels start changing again, so its back to the grind stone again and adjusting the basal rates upwards or downwards, adjusting the correction factor again and then adjusting the bolus ratio. All, then gets ok again until the next time bg levels start changing.
Although its a complete PITA, loss of sleep etc, the Combo benefits from testing every hour, writing all the results down alongside the hourly basal and doing a correction if needed with insulin or jellybabies if really very high or very low and then cancelling the test but adjusting the basals so that the test can be done again the following day

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If it's consistently high BG did you try changing the infusion set? Also try not to change everything at once if you can. With numbers that large, assuming there's no infection, it's more likely to be the bolus ratios rather than the basal rates. BG creeps up with the wrong basal rate, but shoots up with the wrong I:C ratio. But try to just change one thing at a time. It must be very frustrating. I share the frustration after about 2 months on my own pump. It must be awful with a little one. Don't worry about highs too much, but do test for ketones.
 
I started the pump in August 2013, started the injection site in the stomach and ended up in hospital for 3 days because it rejected the site but the pump didn't tell me, I now do it in the top/side of my bum and I haven't had a problem with it for 7 months now, have you tried putting the pump in different places?


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Thanks for all replys the nurse coming after school to download all her data and go from there .phoned the nurse today she thinks if not a virus make be just puberty hormones?shes nearly 10? Today at school it started off ok but by 1.30 she was 19 no keytones . Ive not tried different sites yet and its the accucheck .im up everyhour in the night just contant hourly corrections .im just hoping the nurse can help tomorrow im at my wits end .chloe in herself feel fine though .i thought maybe the insulin or site but she has normal bloods sometimes threw the day so it must be working .
I really really hate this disease you get things sorted then all over the place again


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You say that by 1.30pm bg was 19mmol, is this after eating lunch or before? If its after, then its the lunch carb ratio not right but if its before, then the basal rates need adjusting. Try and add up the daily basal and then the daily bolus with the corrections. If the bolus plus the corrections is a lot more than the basal, then there's a good chance that the basal isnt right if bg levels are going really high although the only real way of finding out is by basal testing unfortunately.

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Another 10 year old girl that I help with her pump has had exactly the same as Chloe for past two weeks. Her consultant thinks it growth spurts/hormones causing the problems.

Unfortunately her consultant said to increase bolus's... But the high's were starting during the night....so this was clearly basals.

Is Chloe using flexlink or rapid d's?

At levels of 19 are you finding that the corrections are working? You may well have to double the correction bolus at this level... But do it manually not by altering the settings......

Basically, if levels are rising 2-3 hours after a bolus for food, then the bolus isn't enough.if it rises at other times then its basals that need to be raised.

It could also be that your offset time and acting time aren't set up inaccordance with how insulin works in Chloes body.
Have you got the meal rise set to 2.8
Which is the minimum with the combo..

Consultants etc can go by the standard theory and training that text books give... Ie Chloe should be trying to be on a basal/bolus ratio of 50/50.... This may not be right for a young girl starting to grow up... Do you know how much ratio of basal to bolus that Chloe is having?

Don't despair... In the longterm a pump will be better, holidays and school days may well prove very different too.... It will get easier honest....



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If you are regularly getting up hourly for corrections - insulin not carbs? - can you program a slightly higher basal dose overnight for the pump? I realise this may be worrying because of hypos, but you could test every 3-4 hours instead of every hour.

Anyway, the nurse is coming soon so I am sure she will sort everything out.
 
Donnely dogs your right nurse thinks growth /puberty hormones her basal gone up now by 2 units and her ratios have changed too seems to be the first day back in single figures !! Nurse said with hormone changes to just test regually and correct and yes corrections may need adjusting as well .shes on flexi link ive been so worried but today all the changes seem to be working together ill have to see what tomorrow holds .thanks for all advice everyone


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The ratio of basal bolus is basically this:

If your daughter was on say 5units of both bolus and basal a day then she would be on a 50/50 ratio.

If she was taking 4 units of basal but 6 of bolus then she would be on a 40 / 60 ratio. If she was taking 6 units of basal and 4 units of bolus it would be a 60/40 ratio. These are just basic examples..

Most Consultants like to see 50/50 but with children and slightly different routines and activitys than adults they may let Chloe's ratio's be slightly 40/60 etc...

I suspect as well that you have also been only shown to change bolus's in grams... Ie if high and Chloe needs more insulin I suspect that you've been told to change the grams of carbs value....in fact it can be better to change the unit value instead...... As this allows more tweaking.....

Ie if chloe was on 1 to 10g of carbs and she needed more bolus.. i suspect you have been told to change her to 1 to 9g or 1 to 8g. In fact you can get good and more accurate levels by changing the units ie if it was 1 unit to 10g then changing to 1.1 unit or 1.2 units to 10g gives the ability to do better tweaking on a combo pump.

Its a lot to take in Shell. If using flexlinks, these can flex and also give erratic readings in some people. A number of people use rapid d's and got more stability.


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Her bolus amount different everday though ?
Yes ive been told to change grams but yes i will give that other way a try if its more accurate .im seeing accu chek rep end of month to learn advance settings so maybe will get taught more then i hope ?
Are the other ones a steel needle though and csn kids use these x


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It'll only be an average bolus/basal ratio that consultants look at. However, if for some reason your daught is literally doubling the amount of bolus she has on a day, then it may well be that on these days she isn't getting enough basal. Ie over xmas with treats my pump is kept on a tbr of 250% because I am whacking through so much bolus that my basals will be unable to cope...

Children can use rapid d's the shortest length needle accuchek do at the moment is 6mm. They are put in manually without a stabbing machine, and I personally found the stabbing machine horrible. I much prefer stainless steel as you can tell immediately if the set is good.

Are you using advanced settings at all? Or have they left you set up with basic settings?


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