Spoke to my nurse

[novorapidboi26]

No no..........

If the dose it constant, which it is on your regime, and the carbohydrate intake is the same, at lunch, dont worry about snacks, then a pattern should form........

If he gets low at say an hour before finishing time then the breakfast dose needs to come down (as opposed to more food). etc etc....

Once you have spotted the patterns in his sugars then you get the dose right, there should be no need to............

Also activity, play time, PE......these might drop him down........

Its all about learning what happens to his bloods on a regular day at skool so u can plan the doses and food........

But do you know all these factors? if not then investigstion must start, so that means testing at critical times at skool, not forever, just till a pattern has been indentified......

 

[SilentAssassin1642]

No no..........

If the dose it constant, which it is on your regime, and the carbohydrate intake is the same, at lunch, dont worry about snacks, then a pattern should form........

If he gets low at say an hour before finishing time then the breakfast dose needs to come down (as opposed to more food). etc etc....

Once you have spotted the patterns in his sugars then you get the dose right, there should be no need to............

Also activity, play time, PE......these might drop him down........

Its all about learning what happens to his bloods on a regular day at skool so u can plan the doses and food........

But do you know all these factors? if not then investigstion must start, so that means testing at critical times at skool, not forever, just till a pattern has been indentified......

when i was diagnosed back in 96 and on twice a day i was told to test before snacking! It's important!If sugars are too high then snacks are a no go!

 

[novorapidboi26]

when i was diagnosed back in 96 and on twice a day i was told to test before snacking! It's important!If sugars are too high then snacks are a no go!

As I said, testing is required alot when trying to establish what going on......

But if your having a bag of crisps and an apple at playtime, thats not gonna do anythin to the old blood sugars.....
assuming the doses are correct

 

[bev]

Sorry to say but I feel like your picking on me for following the advice of a trained and experience healthcare professional.

MrsBoyle, no-one here is trying to pick on you - that couldnt be farther from the truth. Adrienne has 10 years experience of all sorts of regimens and I have 2 years experience. Health Professionals vary from being extremely good to extremely bad in our experiences - so we are just trying to help you to work out whether the advice your nurse has been giving you is 'good' or 'not so good' thats all. If you feel that its 'good' then thats absolutely fine as you *should* have faith in your team.

What training do you have? What qualifications do you have?

All the health professionals in the world cannot learn how to deal with diabetes from a textbook. Looking after a child for 24/7 is *the* best and most accurate way of learning how to deal with all the variables that diabetes throws at us. Adrienne teaches courses at her local hospital as they dont even have a DSN and they are in Adriennes words 'rubbish' - she does carb counting courses and teaches parents how to use the glycogon injection kit as most professionals dont recognise that we should know how to use one for some reason. Adrienne also organises a get-together every year for families and their type 1 children who all spend a weekend together bonding and talking about diabetes and all the latest developments etc. No one child is the same, you can not go by what works for one, with the other as every child is different.

You are quite right, but the health professionals are phasing out the mixed insulins because they recognise that they just do not work for 99% of children due to the growth hormones etc..They havent used them in other countries for 4 or 5 years or more for this reason. Adriennes daughter was on mixed insulins so she has experience of all sorts of different regimens.

We never said we won?t change anything, or no to going on the pump. The nurse explained that the reason he is doing this and that and how we can go about. And recommended we try this first before changing anything which I agree with.

I think its a good idea to change things and if the new insulin works better then thats great. However, through our diabetes journey it appears that a change of insulin in a child rarely seems to make any difference - but it could be that it works for Dylan - which would be brilliant. So unless you are a experience health care professional, you have no right to tell me or anyone how we should treat and care for our son.

I am sorry if you think we were *telling* you what to do - that was never the intention at all. Because we are in touch with hundreds of other families of a type 1 child we do hear lots of stories about what works and what doesnt - so we are going on other people experiences and to some extent our own. Adrienne certainly has lots of experience to draw on. School is 3 weeks away and how do we know that have no one trained? And if we can learn to test bloods in a few hours so can they.

You did say that your nurse would 'train them up if you really wanted her to' - so I assumed that there was no-one trained at school. Learning to do bloods isnt the problem - anyone can learn that in seconds - but its what to do with the results of the test that takes time and knowledge to learn what to do. Sorry if I misunderstood you - but I thought your son was a new starter at the school - because it seemed odd that if he had been to the school before that there was no-one trained to do a blood test. Isn?t the idea to make Dylan feel the same as the other kids? If we can get things to work around the school and times then that is BETTER for Dylan. We should not go on what is best for us but what is best for Dylan.

I agree with you. But your post seemed to say that your nurse wanted you to change times of eating to fit in with the school times - rather than changing things for Dylan's benefit. If it was the latter - then thats great - as long as the new timings of eating benefit Dylan's levels etc.. again perhaps we misunderstood what you meant.I do hope you realise that we are just trying to help you and Dylan - not at all picking on you. It is very hard trying to communicate in black and white text and if we have upset you then I apologise. If you are happy with your nurses advice then thats great.🙂Bev

 

[aymes]

I don't think it's necessarily true to say that the mixed insulins 'don't work' or are 'rubbish'. In the same way, other insulins/systems don't work for all. They certainly are not appropriate for a lot of people but in some cases they can and do work. They worked for me for a few years until my lifestyle changed, and I know a few other people that they work very well for. The great thing on here is that we can share experiences and what works for each of us, but it's important to remember that whatever the solution for one person was, it doesn't mean that it will be the same for others as so many other factors come into play. For me the value is about sharing experiences/opinions which allows you to have informed and worthwhile discussions and make decisions with your medical team, as opposed to replacing their advice.
Mrs Boyle, it sounds to me that you do have a supportive nurse there who wants to work with you so I'm sure between you you'll come up with the solution that works for you, your family and your current situation.

 

[SilentAssassin1642]

As I said, testing is required alot when trying to establish what going on......

But if your having a bag of crisps and an apple at playtime, jesus, thats not gonna do anythin to the old blood sugars.....
assuming the doses are correct

But what if his doses ARENT right? Mixed insulins are known to be abit naff and not work for some people! They could send levels through the roof! I was told to ALWAYS test before snacking, even when my doses were right! Because there could be TONS of other factors affecting blood sugars that day, mixed ibsulins are notorious for being rubbish and imagine if the little one is abit unwell with a cold or something? or excersise has pushed his bloods up?????

 

[bev]

As I said, testing is required alot when trying to establish what going on......

But if your having a bag of crisps and an apple at playtime, jesus, thats not gonna do anythin to the old blood sugars.....
assuming the doses are correct

If Alex had crisps and an apple without insulin - he would be up in the high 20's!😱Crisps are 17 carbs and apples are 15 - he is on 1 unit to 15 carbs in the morning time - so couldnt get away with no insulin.🙂Bev

 

[novorapidboi26]

no need for the blaspheming there! But what if his doses ARENT right? Mixed insulins are known to be rubbish and not work! They could send levels through the roof! I was told to ALWAYS test before snacking, even when my doses were right! Because there could be TONS of other factors affecting blood sugars that day, mixed ibsulins are notorious for being rubbish and imagine if the little one is abit unwell with a cold or something? or excersise has pushed his bloods up?????

I agee with you, but I am holding back in saying get him on MDI because I dont think it is suitable for a child that young, who has problems with needles....I have no doubt in my mind a year or two down the line he will be on MDI........and I also agree that there are factors likes illness, activity which contribute, thats what my point has been, investigate, test at least for a few weeks until a pattern is established....then your on your way......

In the end there might not be any other option but to get him on MDI or a pump ASAP.......

He sould be allowed to snack even if hes not well, as this should of been indentified and insulin adjusted to compensate..........

 

[novorapidboi26]

If Alex had crisps and an apple without insulin - he would be up in the high 20's!😱Crisps are 17 carbs and apples are 15 - he is on 1 unit to 15 carbs in the morning time - so couldnt get away with no insulin.🙂Bev

That applies for MDI.................not twice a day mixes........

 

[bev]

So your saying teh school should do blood tests about 5 times in a day.maybe more

Yes they should be testing as and when required. Alex tests up to 12 times a day - but he is on a pump so tests more often. If Dylan was at home - how many times a day do you test him? It should be the same at school, if not more, as doing P.E. etc can alter levels quite dramatically, as can feeling ill and not wanting to eat scheduled food etc.🙂Bev

 

[novorapidboi26]

Yes they should be testing as and when required. Alex tests up to 12 times a day - but he is on a pump so tests more often. If Dylan was at home - how many times a day do you test him? It should be the same at school, if not more, as doing P.E. etc can alter levels quite dramatically, as can feeling ill and not wanting to eat scheduled food etc.🙂Bev

12 times a day........WOW........are his sugars unpredictable, sorry for changing subject

 

[bev]

That applies for MDI.................not twice a day mixes........

Yes I do understand the difference. The problem seems to be that Dylan's levels are not what they should be on mix's at the moment - so if he were 17mmols and then ate a bag of crips and an apple - he would be in the 20's too. So testing, testing, and more testing is what is required to find out ways of keeping levels at an acceptable range. MrsBoyle - have you been taught how to use a 'correction dose' of insulin to help bring levels down if they are too high? Personally I have no experience of mixed insulins - but I do know a few families who worked out ways of using fast acting insulin to bring levels down when on mixed insulins and it seemed to help a lot.🙂Bev

 

[novorapidboi26]

Yes I do understand the difference. The problem seems to be that Dylan's levels are not what they should be on mix's at the moment - so if he were 17mmols and then ate a bag of crips and an apple - he would be in the 20's too. So testing, testing, and more testing is what is required to find out ways of keeping levels at an acceptable range. MrsBoyle - have you been taught how to use a 'correction dose' of insulin to help bring levels down if they are too high? Personally I have no experience of mixed insulins - but I do know a few families who worked out ways of using fast acting insulin to bring levels down when on mixed insulins and it seemed to help a lot.🙂Bev

Thats just dodgy, if hes on QA insulin, then he may as well be on MDI....the mixture of insulin should be enough to deal with snacks and meals throughout the day, again if the dose is right.

So in theory, his sugars should be pretty much steady, aprt from wee spikes post meal, or drops post excercise...........

 

[bev]

12 times a day........WOW........are his sugars unpredictable, sorry for changing subject

His levels are no less unpredictable than any other diabetic child. The difference is that when you are on a pump, you have very tight ccontrol and if levels change dramatically then this has to be addressed extremely quickly as there is no 'long acting' insulin in the background. You only use fast acting insulin in a pump. If he takes his pump off for sport etc - then you have to test before and after to see how much basal he has missed and if he requires extra or more food and a bolus.

The down side of pumps is that you can get into DKA a lot quicker than you can on MDI. But the upside is that you get much better control, and for children this is very important as they are growing and changing almost daily!
Sometimes we have tested up to 20 times in a day - because he has been to a 'paintball' party in extreme heat and all the adrenalin etc - but he had a great day and not 1 hypo or hyper - so worth every single test.🙂Bev

 

[SilentAssassin1642]

That applies for MDI.................not twice a day mixes........

actually i have to say i believe you are wrong there. When I was on mixed all those years ago, random snacking would send me up into the 20's and that was even with the correct doses! And don't try to tell me that they weren't correct because they were. Carbs still affect people on twice day mixes believe it or not.

 

[novorapidboi26]

actually i have to say i believe you are wrong there. When I was on mixed all those years ago, random snacking would send me up into the 20's and that was even with the correct doses! And don't try to tell me that they weren't correct because they were. Carbs still affect people on twice day mixes believe it or not.

I was reffering to the ratio of QA to carbohydrate potion.....my mistake....should of edited quote.........

Donwside to 2 a day......the control just isnt as accurate........if this so called snack is regular, on a daily basis then the morning dose can deal with it.........its simple........

 

[SilentAssassin1642]

12 times a day........WOW........are his sugars unpredictable, sorry for changing subject

i test about the same amount of times per day at the moment too, testing is required more when starting on a pump until levels get steady.

 

[novorapidboi26]

This thread has sprinted off in the wrong direction.................im bowing out................

Keep is updated MrsBoyle.............

 

[Steff]

Was just about to say that boi,poor mrsboyle her thread has got awry.

 

[Adrienne]

Sorry to say but I feel like your picking on me for following the advice of a trained and experience healthcare professional.

What training do you have? What qualifications do you have?

No one child is the same, you can not go by what works for one, with the other as every child is different.

We never said we won?t change anything, or no to going on the pump. The nurse explained that the reason he is doing this and that and how we can go about. And recommended we try this first before changing anything which I agree with.

So unless you are a experience health care professional, you have no right to tell me or anyone how we should treat and care for our son.

School is 3 weeks away and how do we know that have no one trained? And if we can learn to test bloods in a few hours so can they.

Isn?t the idea to make Dylan feel the same as the other kids? If we can get things to work around the school and times then that is BETTER for Dylan. We should not go on what is best for us but what is best for Dylan.

I apologise wholeheartedly that you believe I am picking on you (can't speak for the others here suffice to say that they aren't either) and am mortified you think I am. I am not like that.

I spend my life helping other families with type 1 diabetes and another rare condition which is all about blood sugar levels which my daughter also has. I run a charity for this also and a support group. She had her first insulin injection at 5 weeks old. She has been through all the different insulins and regimes that were available. I don't teach in hospitals as Bev said but I have held training sessions for the local support group as the local hospitals where I am are completely pants and we are all in agreement with that and are working very hard to try to get it changed.

I am also one of the main characters in the email support group and help people on a daily basis where I can.

I don't have to actually prove to you who or what I am so will stop now. I stand by what I say, I believe your nurse is treating your son just as a text book case (an old text book) and it breaks my heart. I also understand why you want to believe your team which is fair enough. There should be set care plans at school and these should have been sorted out long ago with a plan of testing ie 10.15 am (breaktime), 12.00 (lunch time), 2 pm (midafternoon break). Plus any PE times before and after and when older probably during. There should be snacks of the same carbs at snack times which feature into the mixed regime. If your son's HbA1c is below 7.5 % and you know that it is due to good levels and not too many swings then mixed insulins are ok. If however it is due to too many hypos or hypers or it is above 7.5% then the regime is not working however much you tweak it.

I also don't agree with hardly any of the stuff Novorapidboi has said either about mixed insulins and snacks and corrections and lack of testing which again shouts out to me the damage being done if this was followed on a young child. If you can get the right regime with the right levels now you are setting up a child to have better idea and health in the future. If you only test twice a day what the hell is happening inbetween, very odd way of looking at mixed insulins. There also appears to be a lack of knowledge of how children respond to mixed insulins and snacks, bizarre but do agree with him when he says this is just a forum. We all have our own opinions and we are not medical professionals. We have hands on experience which is different and also has its rightful place.

I have noticed that you do not reply to any of my posts where I have tried to help so I will in future refrain from entering into your threads with questions as I can see my help is not required or appreciated and taken the wrong way. I too am now bowing out. I am really upset that you think I am picking on you and again I apologise as that is not and never is my intention.