Sugarbum
Well-Known Member
- Relationship to Diabetes
- Type 1
Absolutely loving the lingo patricia! I shall be making a mental note of "dual waving" as Ive never heard it before!
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The 'New on Pump' thread!
- Thread starter Patricia
- Start date
- Status
Absolutely loving the lingo patricia! I shall be making a mental note of "dual waving" as Ive never heard it before!
Don't let me wax too lyrical here Sugarbum, but...dual waving really has got to be the business! We struggle more than any food stuff deserves with pasta, rice, pizza. Dual waving offers a chance to spread out the dose over hours, which we know from experience is precisely what we/E needs. Of course, like everything else, the amount of time and precise balance of dose (30% first, then 70%? 40% then 60%? 3 hours? 4 hours? 6 hours?) is up for grabs, down to frequent testing at first, and all about the individual...so we aren't there yet and I'm sure we won't be for some weeks/months -- and even then, not forever.
However. At least there's a chance not to crash before the pasta's hit, or spike in the night with rice. The sensitivity of the therapy is a great relief.
However again. E will come home tonight no doubt in some disarray. The debacle of the earlier mis-judged pasta dose. Oh well. Another boon: we can correct with fine precision, then test at night. That's the theory, anyway!
However. At least there's a chance not to crash before the pasta's hit, or spike in the night with rice. The sensitivity of the therapy is a great relief.
However again. E will come home tonight no doubt in some disarray. The debacle of the earlier mis-judged pasta dose. Oh well. Another boon: we can correct with fine precision, then test at night. That's the theory, anyway!
Yes, Bev, busy weekend and been away for two days! Still away actually, nipping in now on someone else's computer...
Argh, I've just done it again and lost all my typing for this! Suffice it to say that ALL IS WELL. Pump therapy continuing apace and with *great* results: virtually all numbers between 4-8.
Several things to consider and work on: middle of the night reading two nights ago at 13! Eek. We think this may be very long-lasting rice, despite dual waving...On MDI, we did notice him waking on 17 after a dinner of rice. And it would make sense for this reading too -- we'd had it for lunch. Smart father gave 1 unit correction in middle of night though bolus wizard said 1.6 units -- the sensitivity in the night is so great, and the reading was not 'stable' as it were, because it was from rice and would wear off....So 1 unit brought him to 4.5 in the morning!
Anyway, more later. Meeting!
Things to work out, but all is really quite well. Running a little low? Sometimes? I want him a little higher, but both him and his dad are delighted with numbers. Never thought we'd be in this position!
Argh, I've just done it again and lost all my typing for this! Suffice it to say that ALL IS WELL. Pump therapy continuing apace and with *great* results: virtually all numbers between 4-8.
Several things to consider and work on: middle of the night reading two nights ago at 13! Eek. We think this may be very long-lasting rice, despite dual waving...On MDI, we did notice him waking on 17 after a dinner of rice. And it would make sense for this reading too -- we'd had it for lunch. Smart father gave 1 unit correction in middle of night though bolus wizard said 1.6 units -- the sensitivity in the night is so great, and the reading was not 'stable' as it were, because it was from rice and would wear off....So 1 unit brought him to 4.5 in the morning!
Anyway, more later. Meeting!
Things to work out, but all is really quite well. Running a little low? Sometimes? I want him a little higher, but both him and his dad are delighted with numbers. Never thought we'd be in this position!
Also worth saying that hey the tubing does get caught, but to no real trouble! Two nights ago, and 'ouch' from upstairs: caught on door handle! We were warned about this. But it seems no worry, and this, along with the pump actually tumbling down and hanging by its connection to the body (eek, again!), just shows that it's a good piece of kit, withstands all, is not uncomfortable, and really just blends in easily...
Again, a green day. Absolutely astonishing. We have tweaked the morning a bit, raising the basal, but then a mild hypo...so not sure we'll stick with that.
Feeling much more laid back about everything. Not sure what/if to tweak, but numbers so good nothing feels imperative.
And *this* is a true revelation: high numbers in our household bring with them real stress. How to get them down? How did they happen? How to prevent it next time? And how to stop the spiralling panic of feeling bad now and worrying about the future? It's always all hands on deck. This is not the case with one high number -- but it is the case with several, or with swings...with anything where it feels we are at the mercy of it all.
Of course, we are at the mercy of our bodies. However, having incremental control means, for us anyway, that there is a significant stress suddenly removed. It's hard to explain. The heaviness of diabetes is never that far away, and I guess never will be. But -- the daily stress of see-sawing numbers, the crying with frustration (this is me, btw -- the others seems stronger in the face of it all) -- this is so reduced, even so early with the pump, that I'm pinching myself.
I know there are many situations yet to be encountered: sick days, more growth, movement and travel, lots of exercise...But it feels much more doable. Life feels much more dealable. That simple.
The pump is not just about numbers, though numbers are great. It's also about quality of life. I didn't believe it, not really. But I do now. Things are still a pain in the neck, carb counting and set change are faffs, etc. Nothing makes diabetes go away. But a bit of a cloud has lifted, I suspect permanently.
(p.s. home now. Hence ability to think.)
Again, a green day. Absolutely astonishing. We have tweaked the morning a bit, raising the basal, but then a mild hypo...so not sure we'll stick with that.
Feeling much more laid back about everything. Not sure what/if to tweak, but numbers so good nothing feels imperative.
And *this* is a true revelation: high numbers in our household bring with them real stress. How to get them down? How did they happen? How to prevent it next time? And how to stop the spiralling panic of feeling bad now and worrying about the future? It's always all hands on deck. This is not the case with one high number -- but it is the case with several, or with swings...with anything where it feels we are at the mercy of it all.
Of course, we are at the mercy of our bodies. However, having incremental control means, for us anyway, that there is a significant stress suddenly removed. It's hard to explain. The heaviness of diabetes is never that far away, and I guess never will be. But -- the daily stress of see-sawing numbers, the crying with frustration (this is me, btw -- the others seems stronger in the face of it all) -- this is so reduced, even so early with the pump, that I'm pinching myself.
I know there are many situations yet to be encountered: sick days, more growth, movement and travel, lots of exercise...But it feels much more doable. Life feels much more dealable. That simple.
The pump is not just about numbers, though numbers are great. It's also about quality of life. I didn't believe it, not really. But I do now. Things are still a pain in the neck, carb counting and set change are faffs, etc. Nothing makes diabetes go away. But a bit of a cloud has lifted, I suspect permanently.
(p.s. home now. Hence ability to think.)
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Wow Patricia!
It really does seem like you are all so much more 'chilled' and your lives all seem to be a lot more predictable! I can only dream of such good control and relaxation. I am so pleased that you have the time to post on here as it does spur me on to get Alex on a pump asap. But, more than that, it gives me hope that life can return to a bit of normality if we do get a pump.
I would love to wake up in the night and not worry about levels! Actually i would just like to stop worrying altogether - although i know that is probably impossible! Even if i wasnt worrying about diabetes i would be worrying about something else to do with any of my 3 children!
I know diabetes wont ever go away but you do make it sound so much easier to get a grip of! Well done to you all - and keep the posts coming please!
Bev
It really does seem like you are all so much more 'chilled' and your lives all seem to be a lot more predictable! I can only dream of such good control and relaxation. I am so pleased that you have the time to post on here as it does spur me on to get Alex on a pump asap. But, more than that, it gives me hope that life can return to a bit of normality if we do get a pump.
I would love to wake up in the night and not worry about levels! Actually i would just like to stop worrying altogether - although i know that is probably impossible! Even if i wasnt worrying about diabetes i would be worrying about something else to do with any of my 3 children!
I know diabetes wont ever go away but you do make it sound so much easier to get a grip of! Well done to you all - and keep the posts coming please!
Bev
Northerner
Admin (Retired)
- Relationship to Diabetes
- Type 1
Excellent news again Patricia - am particularly interested to hear about how robust the set up is!
I can understand the stress. In the past, before diabetes and as a grown up, I refused to allow my mum to come and 'look after' me when I broke my arm and then at another time, my leg. It wasn't because I don't think she loves me and would be over fussy, but because even silently I would have felt the edge-of-the-seat concern about everything. There were times when the pain-relief either ran out or didn't work when I was in agony, but it would have made it worse for me to have someone there that loved me and virtually powerless to help. I'm not being very clear, but in a clumsy way trying to say how I can understand how much better things must be now that that fear has subsided🙂
I can understand the stress. In the past, before diabetes and as a grown up, I refused to allow my mum to come and 'look after' me when I broke my arm and then at another time, my leg. It wasn't because I don't think she loves me and would be over fussy, but because even silently I would have felt the edge-of-the-seat concern about everything. There were times when the pain-relief either ran out or didn't work when I was in agony, but it would have made it worse for me to have someone there that loved me and virtually powerless to help. I'm not being very clear, but in a clumsy way trying to say how I can understand how much better things must be now that that fear has subsided🙂
So glad things are still going well for you and E. You are giving me strength and hope for my son. I am literally ticking off the days till 7th July!
I look forward to your next update! I am so happy for you and your family. Those levels are what i dream of!
Keep up the good work! 🙂🙂
I look forward to your next update! I am so happy for you and your family. Those levels are what i dream of!
Keep up the good work! 🙂🙂
Thanks you guys. It's so good to hear from you.
We are attempting now a change or two ourselves to basal rates in particular, starting tomorrow. Just little tweaks, adjusting by .05unit/hr in one place, and moving the *time* of the change in another place. It takes about an hour for a change to affect levels in the blood, so you always need to pre-empt a shift you want to try to achieve.
He's generally been waking quite low (sound familiar, Northerner?!). We are therefore also going to try a slight upwards shift from midnight....It's these sorts of things that I find really amazing, these little adjustments. For E anyway, these actually have an impact! It's so wild, and gratifying.
The team have just said something about him being 'sensitive' to insulin changes, so perhaps not everyone is the same (of course, no one would be with diabetes, would they?!) -- but again, less of a sensitivity may mean adjusting basal rates by .1unit/hour etc...It's all about which increments to use in the adjustment...
Anyway. Woke on 6.6. We didn't check him for the first time last night. He'd gone into dinner at 6.4, then was 8.4 before bed, so we thought it was as good a night as any. A low carb dinner too, so not much bolus to contend with.
And we were right! Hurray. I woke in the night though, thinking I heard him fumbling for the meter. Which he wasn't. Sigh. Will all take some getting used to!
We are attempting now a change or two ourselves to basal rates in particular, starting tomorrow. Just little tweaks, adjusting by .05unit/hr in one place, and moving the *time* of the change in another place. It takes about an hour for a change to affect levels in the blood, so you always need to pre-empt a shift you want to try to achieve.
He's generally been waking quite low (sound familiar, Northerner?!). We are therefore also going to try a slight upwards shift from midnight....It's these sorts of things that I find really amazing, these little adjustments. For E anyway, these actually have an impact! It's so wild, and gratifying.
The team have just said something about him being 'sensitive' to insulin changes, so perhaps not everyone is the same (of course, no one would be with diabetes, would they?!) -- but again, less of a sensitivity may mean adjusting basal rates by .1unit/hour etc...It's all about which increments to use in the adjustment...
Anyway. Woke on 6.6. We didn't check him for the first time last night. He'd gone into dinner at 6.4, then was 8.4 before bed, so we thought it was as good a night as any. A low carb dinner too, so not much bolus to contend with.
And we were right! Hurray. I woke in the night though, thinking I heard him fumbling for the meter. Which he wasn't. Sigh. Will all take some getting used to!
Well done on your first night without having to check! You really seem to have got to grips with the pump very quickly. I can only hope that we have half your success.
Keep up your great posts and i wish you continued good luck with the pump!
🙂🙂🙂
Keep up your great posts and i wish you continued good luck with the pump!
🙂🙂🙂
Sugarbum
Well-Known Member
- Relationship to Diabetes
- Type 1
Patricia,
Great to read again on how it is going for you all, a real insight. I just cant believe these numbers!!! Fantastic! I cant believe what tight control you are getting, but how relaxed you sound and E with the approach and change in life. I am abit taken aback! These are all round great results.
Mand I cant wait to hear from you as well!!
x
Great to read again on how it is going for you all, a real insight. I just cant believe these numbers!!! Fantastic! I cant believe what tight control you are getting, but how relaxed you sound and E with the approach and change in life. I am abit taken aback! These are all round great results.
Mand I cant wait to hear from you as well!!
x
This thread is so inspiring. I am going to ask a really stupid question and probably should know the answer but my lack of diabetes care and help shows that I don't. Here goes..............................
What is MDI and bolus or basal or whatever its called? I honestly have no idea.😱
What is MDI and bolus or basal or whatever its called? I honestly have no idea.😱
Well if your on both of those insulins then your on MDI. It means that you have as many injections as you need to cover food plus your long acting insulin.
Some people are on a mix which is 2 injections a day - but that means they cant use a fast acting insulin like levemir to correct them if they are high, like you can.
Not everyone can go on a pump there are certain criteria that have to apply. These are in the NICE guidelines, but too many to type here!
If you have a high hba1c level
If you have lots of hypo's
If you have lots of hypers
I cant remember all the other reasons now - but if you google NICE guidelines then it will show you all you need to know.
What is your hba1c?🙂Bev
Some people are on a mix which is 2 injections a day - but that means they cant use a fast acting insulin like levemir to correct them if they are high, like you can.
Not everyone can go on a pump there are certain criteria that have to apply. These are in the NICE guidelines, but too many to type here!
If you have a high hba1c level
If you have lots of hypo's
If you have lots of hypers
I cant remember all the other reasons now - but if you google NICE guidelines then it will show you all you need to know.
What is your hba1c?🙂Bev
How long have you been diagnosed, Lorraine? As far as I can gather, gaining control is pretty awful early on for *everyone*, so don't feel bad.
If you've been diagnosed longer, it may be time for a change?
There are NICE guidelines (don't know what the letters stand for offhand, someone will!) about being eligible for a pump (not great control, or hypo unawareness, etc) but more and more these seem to be able to be worked around in any case. My son's control wasn't been desperately bad all in all on MDI -- but we were very motivated, as was he, to see improvements etc. We also struck lucky with consultants and our GP.
I'm sorry you're feeling down. Out of whack numbers aren't going to help physically or psychologically. Are you in touch with a decent diabetes team?
If you've been diagnosed longer, it may be time for a change?
There are NICE guidelines (don't know what the letters stand for offhand, someone will!) about being eligible for a pump (not great control, or hypo unawareness, etc) but more and more these seem to be able to be worked around in any case. My son's control wasn't been desperately bad all in all on MDI -- but we were very motivated, as was he, to see improvements etc. We also struck lucky with consultants and our GP.
I'm sorry you're feeling down. Out of whack numbers aren't going to help physically or psychologically. Are you in touch with a decent diabetes team?
Thanks otherwise all for good thoughts and comments. Numbers good again today, though two mild hypos -- one the same-ish time as yesterday, so we're changing that basal rate! The other we think was from sheer hunger, late in the afternoon...
Otherwise -- all good. Literally. Again, 4-8mmols. Wow.
One thing though: too easy to forget to bolus! It's a whole different habit to develop! This has happened twice! Did you do it? Oops, no. No faff with needles etc means that life becomes a bit more like it used to. We figure out the carb etc but then forget the final step and just sit down to eat!
Brief conversation at bed about whether he is glad he went on the pump etc: unequivocal yes. Only difficult thing is sleeping, but he's made virtually no fuss about that and says he's finding ways around it. Otherwise it makes a huge difference to be with his friends at lunch rather than going off to the medical room to inject...And tonight, he had a brie and grape sandwich before bed. We'll test him at 12 midnight, but the very idea of having one would have been just out of the question two weeks ago. The bolus was just too inaccurate with the levermir, esp at night, then. Whereas now, and already, we can be quite sure of nothing major. Maybe a little carb top-up, but the nights are so steady that that's it.
Set change so quick tonight I missed almost the whole thing while unloading the dishwasher! Some pain while removing the 'guide needle' (which puts the tiny cannula in), which is too bad. But over soon he assures us. Getting a couple of dots on his tummy from the sets, but nothing compared to the bruising from injections. I'm sure these will become more and more, but again...it's a different ballgame and level of intensity of physical impact with a pump.
Night!
Otherwise -- all good. Literally. Again, 4-8mmols. Wow.
One thing though: too easy to forget to bolus! It's a whole different habit to develop! This has happened twice! Did you do it? Oops, no. No faff with needles etc means that life becomes a bit more like it used to. We figure out the carb etc but then forget the final step and just sit down to eat!
Brief conversation at bed about whether he is glad he went on the pump etc: unequivocal yes. Only difficult thing is sleeping, but he's made virtually no fuss about that and says he's finding ways around it. Otherwise it makes a huge difference to be with his friends at lunch rather than going off to the medical room to inject...And tonight, he had a brie and grape sandwich before bed. We'll test him at 12 midnight, but the very idea of having one would have been just out of the question two weeks ago. The bolus was just too inaccurate with the levermir, esp at night, then. Whereas now, and already, we can be quite sure of nothing major. Maybe a little carb top-up, but the nights are so steady that that's it.
Set change so quick tonight I missed almost the whole thing while unloading the dishwasher! Some pain while removing the 'guide needle' (which puts the tiny cannula in), which is too bad. But over soon he assures us. Getting a couple of dots on his tummy from the sets, but nothing compared to the bruising from injections. I'm sure these will become more and more, but again...it's a different ballgame and level of intensity of physical impact with a pump.
Night!
Adrienne
Well-Known Member
- Relationship to Diabetes
- Parent
Pasta
Hi
I'm back, missed you all, been ill and away and still not myself but will dip in and out, especially with the pump stuff which is my thing (as Bev knows). I will hopefully be a certified pump trainer at some point hopefully this year.
Patricia - pasta, does not always have to be a dual wave. For my daughter we tried all different ways and the one that works best for us at the moment is to give the full bolus (ie normal bolus) of the whole lot and then do a temporary basal increase of 165% over 3 hours. By the way for the carbs we use 25 cho for 100g cooked pasta but if there is a cheese sauce on it we effectively bolus for the the cheese as well (I know it goes against the grain but that fat is a problem). One friend uses 30cho for 100g cooked pasta if cheese sauce.
Rice - this doesn't start working for a while after eating it so if you do a dual wave the chances are there could be a hypo immediately after eating (if you do the bolus first). So we use 30/70 or 40/60 dual wave over 1 1/2 hours.
MacDonalds we do 70/30 over 1 1/2 hours.
If you have tried jacket potato with cheese and beans and can't get it right, don't panic. Only 20% of pumpers can control that. I am one of the 80%. It is nigh impossible due to the jacket (for some reason), the fat and the fibre. At the moment we do a normal bolus for the full amount of carbs and then a 150% temp basal for 1 1/2 hours. It is the closest we have come to getting is ok.
Any time you want any help with anything please please give me a shout. I'm more than happy to help with anything to do with pumping (or anything else of course).
PS I love the email group www.childrenwithdiabetesuk.org group. They are like family to me now. They are very different to this group. This is just for other people's info as a couple of people have commented that this is a better group. It is not better nor worse. They are different and give different types of support. The email group is purely for parents of children with diabetes, it does not deal with anything to do with type 2, none of the children on our group have type 2 and it does not deal with adults with type 1, just children. It really is amazing the information that all the parents hold between them, its astonishing how clever and well informed they are. Some of the parents have type 1 and a couple have type 2 but it is ultimately about the children. You would not believe the amount of children who go on to pumps after joining our email group. People come along and have never heard of pumps or how to get them. Ask Bev, she has been armed with info for her son about getting a pump. So please before anyone else says this or that is better or worse please be aware they are different, they are both fantastic groups.
The reason for me putting that is that I do not want new parents to diabetes put off the email group. They may well need the other group in some capacity but don't know it unless they try. The way of thinking about children and diabetes is so very different these days.
The latest I heard is that if you are on BB (basal bolus) you now do not give long acting carbs to treat a hypo, it is now supposed to be the same as if on a pump, just give quick acting. I know no more info on it that than but if anyone wants me to find out, let me know and I can do that on Monday. I don't suggest anyone follows this yet if they have not been told.
Anyway its good to be back and Patricia, you are doing absolutely fantastically.🙂
Hi
I'm back, missed you all, been ill and away and still not myself but will dip in and out, especially with the pump stuff which is my thing (as Bev knows). I will hopefully be a certified pump trainer at some point hopefully this year.
Patricia - pasta, does not always have to be a dual wave. For my daughter we tried all different ways and the one that works best for us at the moment is to give the full bolus (ie normal bolus) of the whole lot and then do a temporary basal increase of 165% over 3 hours. By the way for the carbs we use 25 cho for 100g cooked pasta but if there is a cheese sauce on it we effectively bolus for the the cheese as well (I know it goes against the grain but that fat is a problem). One friend uses 30cho for 100g cooked pasta if cheese sauce.
Rice - this doesn't start working for a while after eating it so if you do a dual wave the chances are there could be a hypo immediately after eating (if you do the bolus first). So we use 30/70 or 40/60 dual wave over 1 1/2 hours.
MacDonalds we do 70/30 over 1 1/2 hours.
If you have tried jacket potato with cheese and beans and can't get it right, don't panic. Only 20% of pumpers can control that. I am one of the 80%. It is nigh impossible due to the jacket (for some reason), the fat and the fibre. At the moment we do a normal bolus for the full amount of carbs and then a 150% temp basal for 1 1/2 hours. It is the closest we have come to getting is ok.
Any time you want any help with anything please please give me a shout. I'm more than happy to help with anything to do with pumping (or anything else of course).
PS I love the email group www.childrenwithdiabetesuk.org group. They are like family to me now. They are very different to this group. This is just for other people's info as a couple of people have commented that this is a better group. It is not better nor worse. They are different and give different types of support. The email group is purely for parents of children with diabetes, it does not deal with anything to do with type 2, none of the children on our group have type 2 and it does not deal with adults with type 1, just children. It really is amazing the information that all the parents hold between them, its astonishing how clever and well informed they are. Some of the parents have type 1 and a couple have type 2 but it is ultimately about the children. You would not believe the amount of children who go on to pumps after joining our email group. People come along and have never heard of pumps or how to get them. Ask Bev, she has been armed with info for her son about getting a pump. So please before anyone else says this or that is better or worse please be aware they are different, they are both fantastic groups.
The reason for me putting that is that I do not want new parents to diabetes put off the email group. They may well need the other group in some capacity but don't know it unless they try. The way of thinking about children and diabetes is so very different these days.
The latest I heard is that if you are on BB (basal bolus) you now do not give long acting carbs to treat a hypo, it is now supposed to be the same as if on a pump, just give quick acting. I know no more info on it that than but if anyone wants me to find out, let me know and I can do that on Monday. I don't suggest anyone follows this yet if they have not been told.
Anyway its good to be back and Patricia, you are doing absolutely fantastically.🙂
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