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going up!!??
- Thread starter bev
- Start date
- Status
Thank goodness you've found him bev -- it sounds like he will get a CGM, and probably quickly. It's pretty irresponsible for a ped diabetes team not to have access to one, as from what I hear they can really help track things through... Hmm.
Hope he gets in touch pronto with a plan of action for Alex's numbers. By the way, we saw our consultant yesterday -- hba1c not dreadful given the troubles we've had (8.1), but more importantly, he was even quite laid back about us raising the evening levermir when we knew we were having pasta and rice, in order to try to get on top of the inevitable morning rise as a result. Interesting. So he's willing to play with a unit or two in isolated situations, even. So we did so last night, to little effect this morning, but will keep it up and see what happens.
Also emerged that as suspected, E has lost a little weight, which is now making him rather skinny! Very tall though. Consultant wants more weight on him to ensure proper growth. Another reason for the pump: can handle huge amounts of carb with more ease! He is eating a lot, but would happily eat more between meals, and doesn't because of need to calculate, inject, and take account of previous bolus etc...
Sigh.
Hope he gets in touch pronto with a plan of action for Alex's numbers. By the way, we saw our consultant yesterday -- hba1c not dreadful given the troubles we've had (8.1), but more importantly, he was even quite laid back about us raising the evening levermir when we knew we were having pasta and rice, in order to try to get on top of the inevitable morning rise as a result. Interesting. So he's willing to play with a unit or two in isolated situations, even. So we did so last night, to little effect this morning, but will keep it up and see what happens.
Also emerged that as suspected, E has lost a little weight, which is now making him rather skinny! Very tall though. Consultant wants more weight on him to ensure proper growth. Another reason for the pump: can handle huge amounts of carb with more ease! He is eating a lot, but would happily eat more between meals, and doesn't because of need to calculate, inject, and take account of previous bolus etc...
Sigh.
I know its only a small step and nowhere near to getting a pump yet - but at least we will be able to find out whats going in the background.
Alex hasnt actually lost weight but he hasnt gained any in a few months - mostly because he hates the hassle etc that goes with extra snacks! He is skinny though. is hba1c was 8.2 - so much the same as your sons. Not dreadful - but not great either.
When he does have an extra snack we always make sure its over 2 hours from when he last ate - and then we calculate as if its a 'true' number i.e. we have no way of knowing how much bolus is left from previous meal so start afresh as it were. But on a pump i imagine its a lot easier to sort out. Also i think because Alex is always high it sort of compensates for that if we get it wrong! lol. Patricia, did you join the other mailing list for children?🙂 Bev
Alex hasnt actually lost weight but he hasnt gained any in a few months - mostly because he hates the hassle etc that goes with extra snacks! He is skinny though. is hba1c was 8.2 - so much the same as your sons. Not dreadful - but not great either.
When he does have an extra snack we always make sure its over 2 hours from when he last ate - and then we calculate as if its a 'true' number i.e. we have no way of knowing how much bolus is left from previous meal so start afresh as it were. But on a pump i imagine its a lot easier to sort out. Also i think because Alex is always high it sort of compensates for that if we get it wrong! lol. Patricia, did you join the other mailing list for children?🙂 Bev
Yes, we tend to allow more snacks because E if anything (the strange two weeks aside!) has a tendency to run low at snack time (eg after school)...BUT we then cannot correct at the evening meal, which tends to be under two hours from snack time, so the reading isn't correct, etc... Saying that, we haven't needed to correct with or without a meal since his basal has been settled, last two weeks.
I've just thought of something. If Alex is running high, or tends to anyway (before now too, do you think?), then snacks *will* have a much more tangible effect on his bgl, because his fasting level is high already. We have found that with E's levermir being about right, he can actually 'take' a small (<14g) snack with little real effect (eg rising to 9/10 quite briefly, then dropping again to 6/7) -- whereas when the levermir was less tight (before his real run of highs even), ANY snack threw him off for a while. This seems not to be the case anymore, and makes sense.
The pump definitely takes account of the amount of bolus already in the system, which is just a *huge* advantage. I long for the day when E can come home and have a sandwich if he wants! He *is* incredibly hungry, so really packs it in mealtimes (100 g carb, for instance, at an evening meal. Amazing that he's not gaining weight with this. Doctor thought appetite due to 'testosterone' as much as anything! Puberty, here we come...).
As for other mailing list -- lame as it sounds, I *think* I have joined. I just find the system infinitely more difficult to use, and get the daily digest, but can't figure out how to access the threads with any ease, eg the actual site. Did you get sent a password? And do you need to use it every time? Did it change when the system changed?
Want to get 8.1 down though, as does E. The pay-off of just one percentage point is thoroughly documented, however often it can be hit, for however a duration. ANY amount of time with very good control helps long term complication risks; this much was clear from the JDRF meeting a couple of weeks ago.
I've just thought of something. If Alex is running high, or tends to anyway (before now too, do you think?), then snacks *will* have a much more tangible effect on his bgl, because his fasting level is high already. We have found that with E's levermir being about right, he can actually 'take' a small (<14g) snack with little real effect (eg rising to 9/10 quite briefly, then dropping again to 6/7) -- whereas when the levermir was less tight (before his real run of highs even), ANY snack threw him off for a while. This seems not to be the case anymore, and makes sense.
The pump definitely takes account of the amount of bolus already in the system, which is just a *huge* advantage. I long for the day when E can come home and have a sandwich if he wants! He *is* incredibly hungry, so really packs it in mealtimes (100 g carb, for instance, at an evening meal. Amazing that he's not gaining weight with this. Doctor thought appetite due to 'testosterone' as much as anything! Puberty, here we come...).
As for other mailing list -- lame as it sounds, I *think* I have joined. I just find the system infinitely more difficult to use, and get the daily digest, but can't figure out how to access the threads with any ease, eg the actual site. Did you get sent a password? And do you need to use it every time? Did it change when the system changed?
Want to get 8.1 down though, as does E. The pay-off of just one percentage point is thoroughly documented, however often it can be hit, for however a duration. ANY amount of time with very good control helps long term complication risks; this much was clear from the JDRF meeting a couple of weeks ago.
Patricia,
We dont allow Alex to have the 14g snack that his team have said he can have - insulin free! Any snack he eats are always covered by insulin now. is levels were too crazy. Also it just doesnt make sense to me that a 14g snack is ok?
Pumping is the way to go for better control definately. Can you tell me where you found the researh about 1% making a huge difference to complications? We are going to a JDRF on 30th May - cant wait they sound great.
We are also going away this weekend with the people of the other list - 40 type 1 children! You need to click on the left hand side on mailing lists etc and it should guide you through it - if i can do it anyone can! lol.
Also we have a DUK family support weekend in Kent in May - looking forward to that too! Bev
We dont allow Alex to have the 14g snack that his team have said he can have - insulin free! Any snack he eats are always covered by insulin now. is levels were too crazy. Also it just doesnt make sense to me that a 14g snack is ok?
Pumping is the way to go for better control definately. Can you tell me where you found the researh about 1% making a huge difference to complications? We are going to a JDRF on 30th May - cant wait they sound great.
We are also going away this weekend with the people of the other list - 40 type 1 children! You need to click on the left hand side on mailing lists etc and it should guide you through it - if i can do it anyone can! lol.
Also we have a DUK family support weekend in Kent in May - looking forward to that too! Bev
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Thanks bev -- I'll give it a go!
As for 14g snack -- yes, it doesn't make sense, I agree, and of course doesn't ever hit 'invisibly'. There is always a rise, and I don't know why the team say it's okay, ours does too -- it isn't, strictly speaking! All I was saying is that we have found when E's basal is keeping him at about 5 fasting level, the 14g snack has little impact, and not for long (a blip, in other words). When E's basal isn't right or somehow the day's gone wrong, then the snack seems to 'tip' him over some edge, so that it's then very difficult to get control again.
The study about complications and percentages is a very well known one...We knew about it before the conference...but I can't remember the name of it. It took place 20 years ago, which is why so much can be stated with some certainty: the subjects have all been followed through and all complications and control noted. I'll try and find the name of it; I think my husband will know it off the bat.
Presumably you haven't heard from your consultant yet? Argh!
Re holidays etc: E went to the DUK focus group in London a couple of weeks ago, then we all went to the JDRF day, which was really good. We decided against going to the May holiday this year -- too much at the moment. But I'm beginning to really feel that being in touch with others in a similar situation is very, very important in all ways, yes.
As for 14g snack -- yes, it doesn't make sense, I agree, and of course doesn't ever hit 'invisibly'. There is always a rise, and I don't know why the team say it's okay, ours does too -- it isn't, strictly speaking! All I was saying is that we have found when E's basal is keeping him at about 5 fasting level, the 14g snack has little impact, and not for long (a blip, in other words). When E's basal isn't right or somehow the day's gone wrong, then the snack seems to 'tip' him over some edge, so that it's then very difficult to get control again.
The study about complications and percentages is a very well known one...We knew about it before the conference...but I can't remember the name of it. It took place 20 years ago, which is why so much can be stated with some certainty: the subjects have all been followed through and all complications and control noted. I'll try and find the name of it; I think my husband will know it off the bat.
Presumably you haven't heard from your consultant yet? Argh!
Re holidays etc: E went to the DUK focus group in London a couple of weeks ago, then we all went to the JDRF day, which was really good. We decided against going to the May holiday this year -- too much at the moment. But I'm beginning to really feel that being in touch with others in a similar situation is very, very important in all ways, yes.
Northerner
Admin (Retired)
- Relationship to Diabetes
- Type 1
I think this is the study you are referring to - The Diabetes Control and Complications Trial.
http://diabetes.niddk.nih.gov/dm/pubs/control/
http://diabetes.niddk.nih.gov/dm/pubs/control/
Just got a call from his team and the nice consultant wants Alex in hospital for 3 days to monitor it all - he isnt happy just leaving it until a cgm is available. So if they have a bed free on the chidrens ward tomorrow morning - in he goes! I just hope he can leave on the friday as we are going to the holiday with the other diabetic children! Bev
Well they have got a bed for him - so will be there until friday. And you will never guess - he woke this morning with the best level ever 6.6! I will be so embarassed if his levels all decide to fall into range! Sods law i think you call it!
Bev
Bevlol its always the way bev happened to me when i had a bad infection. levels had been all 20+ for a couple of days and no matter what i did it didnt help called the doctor and explained i couldnt even get out of bed to go see them so they arrainged to come see me later in the day and you guesed it my levels started to come down. by the time the doc saw me i was with in range!!!!
happened to me when i had a bad infection. levels had been all 20+ for a couple of days and no matter what i did it didnt help called the doctor and explained i couldnt even get out of bed to go see them so they arrainged to come see me later in the day and you guesed it my levels started to come down. by the time the doc saw me i was with in range!!!!Hi all,
Just a quick update as i have popped home for some stuff to keep Alex entertained!
His level at lunch was 9!!!!!!!! (although he was 15 an hour earlier)
I cant believe he was in range! Then at 2 o clock he was hypo 3! So he has gone from very high numbers to in range or low - just our luck that his pattern has decided to change - i just hope we get a few highs just to prove his past levels!
On another note - trying to carb count in hospital is a nightmare -so i am taking my scales with me. They gave us a list of food and its carb - but it is very 'guess' work. Example - 1 scoop of mash 10g. The 'scoops' were flat and mixed with the gravy - so i guessed - then i asked how they made the gravy and the DSN said why does that matter? I explained there can be a lot of difference if its just oxo cubes or granules. I also told her we accurately measure the gravy in a jug and its difficult to tell splattered on a plate and mixed with the mince etc. So she said have sausages - i asked what carbs they were - she said are they different? She thought sausages were carb free!Then she told me the kitchens wouldnt know anyway as it all comes in and just warmed up. Then she said have rice - i asked what rice it was - she said bog standard this is the nhs - i explained that rice can vary so much i really didnt want to 'guesstimate'! Basmati is better than cheap white rice - i dont think she knew what i meant.
She then said the 'dietician' has done the list and we always use it - to which i explained that although its ok as a basic guide - it really wasnt accurate enough for us as the shepherds pie at lunch had proved! I suspect that is why he was hypo 2 hours later as i had guesstimated wrong.
After the hypo Alex was hungry so i asked for some toast - the nurse (not dsn) gave it to us and walked off -i said dont you need to write down his insulin etc . - she said ' oh i thought he could just have it as a snack! Without insulin. Even though she had seen him eat jelly babies and a biscuit for the hypo.
The worst thing about this is i suspect she thought we couldnt carb count - hence the high levels! I overheard her say to another nurse ' we just want to check they are getting the basics right'!!!!
I dont mind at all if they want to check everything that we are doing - its just the fact that they clearly cannot carb count and they are checking that we can! Bev
Just a quick update as i have popped home for some stuff to keep Alex entertained!
His level at lunch was 9!!!!!!!! (although he was 15 an hour earlier)
I cant believe he was in range! Then at 2 o clock he was hypo 3! So he has gone from very high numbers to in range or low - just our luck that his pattern has decided to change - i just hope we get a few highs just to prove his past levels!
On another note - trying to carb count in hospital is a nightmare -so i am taking my scales with me. They gave us a list of food and its carb - but it is very 'guess' work. Example - 1 scoop of mash 10g. The 'scoops' were flat and mixed with the gravy - so i guessed - then i asked how they made the gravy and the DSN said why does that matter? I explained there can be a lot of difference if its just oxo cubes or granules. I also told her we accurately measure the gravy in a jug and its difficult to tell splattered on a plate and mixed with the mince etc. So she said have sausages - i asked what carbs they were - she said are they different? She thought sausages were carb free!Then she told me the kitchens wouldnt know anyway as it all comes in and just warmed up. Then she said have rice - i asked what rice it was - she said bog standard this is the nhs - i explained that rice can vary so much i really didnt want to 'guesstimate'! Basmati is better than cheap white rice - i dont think she knew what i meant.
She then said the 'dietician' has done the list and we always use it - to which i explained that although its ok as a basic guide - it really wasnt accurate enough for us as the shepherds pie at lunch had proved! I suspect that is why he was hypo 2 hours later as i had guesstimated wrong.
After the hypo Alex was hungry so i asked for some toast - the nurse (not dsn) gave it to us and walked off -i said dont you need to write down his insulin etc . - she said ' oh i thought he could just have it as a snack! Without insulin. Even though she had seen him eat jelly babies and a biscuit for the hypo.
The worst thing about this is i suspect she thought we couldnt carb count - hence the high levels! I overheard her say to another nurse ' we just want to check they are getting the basics right'!!!!
I dont mind at all if they want to check everything that we are doing - its just the fact that they clearly cannot carb count and they are checking that we can!
Bev- Status