going up!!??

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bev

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Hi all,
Alex has been high for days now - he is rarely under 15! We are correcting with each meal and correcting 2 hours after a meal. At 5 o clock tonight he was 17 so we corrected - then at 8 o clock his pre meal test was 19.5! Anyone know why it would have gone up after a correction dose? Also do you think something is wrong as it cant be right correcting all the time? There are no keytones - but he did have an op on thursday to remove 2 moles off his back - i cant believe the amount of stitches! The scars are not infected as far as i can see. Thanks. Bev
 
bev said:
Hi all,
Alex has been high for days now - he is rarely under 15! We are correcting with each meal and correcting 2 hours after a meal. At 5 o clock tonight he was 17 so we corrected - then at 8 o clock his pre meal test was 19.5! Anyone know why it would have gone up after a correction dose? Also do you think something is wrong as it cant be right correcting all the time? There are no keytones - but he did have an op on thursday to remove 2 moles off his back - i cant believe the amount of stitches! The scars are not infected as far as i can see. Thanks. Bev
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Hi Bev its probably to do with having the op :( My father-in-law had a cardiac op and his sugars went through the roof..he's not even diabetic!!! I hope he gets back to normal soon 🙂
 
Thanks insulinaddict!

Wow thats crazy that a non- diabetic had high blood sugars. I think you may be right about the op having an effect. Bev


p.s. I used to live in wallasey!
 
bev said:
Thanks insulinaddict!

Wow thats crazy that a non- diabetic had high blood sugars. I think you may be right about the op having an effect. Bev


p.s. I used to live in wallasey!
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Ha small world isn't it!! Im originally from down south [ Berkshire] Been up north for a few years now though 🙂 My sugars have been all over the place since the warmer weather has started... anything from high 20's to 2's 😡 Low carbing at the moment and that seems to be having a good effect on my levels, not much good to Alex though as he probably using alot more energy than me ha ha
 
if Alex is high all the time, you may need to raise his nightime insulin a little bit but speak to his dsn before you do. its almost certainly due to the op- usually high BG's mean your ill, so he may be fighting off a small infection? (not necessarily from the op but it may have lowered his imune system).

I had a tooth out monday- they had to cut my gum and stitch up the inside of my mouth and my BG have been running higher all week (with the exeption of two days of constant lows).

Hope he he feels better soon! Oh and if you do raise his back ground be prepared to drop it again as he gets better.
 
Thanks Anthony,
I will ring his DN on monday to check things with her - it does make sense to change his levemir - but i am loathe to do it without proper authorisation - i get very nervous changing things! But i suspect you are probably right! Thanks. Have just put him to bed and he was 17 so corrected again! Bev
 
I'm wondering if it might have anything to do with his honeymoon period. If the corrections aren't correcting as you'd expect his need for injected insulin has obviously increased a great deal. As you may know, I'm heading in the opposite direction!

I think as long as he feels OK then it's best to wait until you can speak to his DSN. Just keep a close eye (as I know you will!), and if he goes particularly high check for ketones (and maybe see if his breath smells of pear drops).

Hope things settle down tomorrow for him, and you!🙂
 
bev said:
Thanks Anthony,
I will ring his DN on monday to check things with her - it does make sense to change his levemir - but i am loathe to do it without proper authorisation - i get very nervous changing things! But i suspect you are probably right! Thanks. Have just put him to bed and he was 17 so corrected again! Bev
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Bev, you really do need to start making descions about altering Alex's insulin, without asking permision.
There is no way Alex can have a pump until you start to do this. As it's vital changes/corrections are made very quickly with a pump if running high as only small amounts of insulin being used.I also thought you were going to discuss with his team about using his Levemir twice a day. :confused:
Any changes you make just change by no more than 2 units at a time.
Write it all down so you can look back and see what happened when you made the change. Always wait 3 days before changing the basal dose again as it takes that long to work properly.
Also as Alex is a growing lad has his carb ratio also changed?
I hope things improve soon.
 
hi bev,

its, as most have said on here, probably to do with his op that he is high and also probably due to the heat this week too. i would start to adjust his insulin yourself but only if you feel ready to. maybe try upping it by a couple of units to see what happens, but remember it takes 3 days to get the full picture as basal takes that long to work into the system.

hope this helps and hope alex is better soon 🙂
mike
 
I agree with Sue that before apump you and Alex need to be confident adjusting insulin, reacting to changes and identifying reasons when this happens. On this site we are very quick to say ask your DSN/team, don't chnage anything without talking to a professional etc. This is because we don't want to give specific advice. Whereas most us us will make basic changes and then ask for advice from DSN if these measures don't help.

Have you changed the novorapid cartridge?
 
Hi all,

The reason i havent changed anything this time is because the new consultant told me not to! He wants to get to the bottom of what the problem is rather than tinkering with something and still being in the dark as to whether thats the reason for his erratic levels or not.( he has given us 2 weeks until he can get hold of a cgm).I did ask him about splitting the levemir but he wasnt keen to for the reason stated before.
I do and have made various changes in the past - in fact its us who judge what to use as a correcton - as the dsn is clueless! It is us who decided to correct him after the 2 hour post meal - his dsn told us not to bother and to wait until his next pre meal reading.!
The problem with yesterdays reading was that even after correcting he still went higher - this is something out of the ordinary realms of what we are used to dealing with - thats why i asked the question on here.
Sue, i think it should be remembered that we are only 5 months into all of this and therefore still learning. I very much doubt that i wouldnt be able to use or understand a pump - as i understand it - training is given and i would feel very confident making changes once we had been trained - i just didnt want to change anything yesterday as we had been told not to - i was just looking for a possible explanation as to why this had happened. Bev
 
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Hi bev i was just wondering how alex is today.. i hope his levels have stabalised for you. Dont worry about being a learner.. I'm still learning everyday and iv'e been on insulin for ages 🙂 As someone said before maybe its the honeymoon coming to an end.. my level went like that last year, correcting did no good, sometimes i would still go higher :confused: then after a week i would hypo without any reason!! Have you checked that the pens are working/ not blocked etc? maybe try a new pen. I hope he feels better soon, let us know how it goes :D
 
bev said:
Hi all,

The reason i havent changed anything this time is because the new consultant told me not to! He wants to get to the bottom of what the problem is rather than tinkering with something and still being in the dark as to whether thats the reason for his erratic levels or not.( he has given us 2 weeks until he can get hold of a cgm)
I do and have made various changes in the past - in fact its us who judge what to use as a correcton - as the dsn is clueless! It is us who decided to correct him after the 2 hour post meal - his dsn told us not to bother and to wait until his next pre meal reading.!
The problem with yesterdays reading was that even after correcting he still went higher - this is something out of the ordinary realms of what we are used to dealing with - thats why i asked the question on here.
Sue, i think it should be remembered that we are only 5 months into all of this and therefore still learning. I very much doubt that i wouldnt be able to use or understand a pump - as i understand it - training is given and i would feel very confident making changes once we had been trained - i just didnt want to change anything yesterday as we had been told not to - i was just looking for a possible explanation as to why this had happened. Bev
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Bev, I am not having a go at you. Please don't think that. Having numbers that high is not good for Alex he must feel awful.
Having to keep correcting at the 2 hr mark and the fact he is high so much means 2 things his basal and bolus are wrong ie he is being starved of insulin which his body needs.
5 mths down the line you should be well into the swing of things and adjusting as needed.
Pump training............... A big shock awaits you.
It is set up with a basal they think might suit and a carb ratio,then you are left to it.
You are shown how to change and fill cartridge and cannula end of story.
So you must know how to change things regarding Alex's dosage be it bolus or basal.
If you can not do this using MDI then a pump is way out of the question.
Did you buy the books
Using Insulin, think like a pancreas and pumping insulin?
I know all of these books have been recomened many times to newbies. If not please think about doing so as they will help you both no end to control Alex's diabetes.
Best wishes
Sue
 
Hiya Bev

Worry not. Next week will soon be upon us and you will meet so many children on MDI and on pumps you will be in type 1 diabetes heaven !!!! You will see what we all do, you can ask any question you like.

Depending on your hospital and if you want good care on a pump I would refer to a good one, your hospital will be with you every step of the way and they are not, they that is not good enough.

We had a full day training and left pumping saline, well my daughter did. Then I insert a set in me and I pumped saline and then back to my daughter. The next week was another full days training and my daughter left pumping insulin ie going 'live'. The nurse when rang us at 7 pm every day and I read out every single reading, she tweaked, we discussed what I thought so I would get the hang of it and then I tweaked.

I still email or ring one of the four fantastic top notch DSN's whenever I want and someone will contact me.

Bring on next weekend, thats all I have to say.

Take care
 
Hi all,
Thanks all so much for your replies.

Today Alex is still high. We are correcting at mealtimes and then again 2 hours later and also last thing at night. None of this seems to be helping bring him down. I have got the email address of the brilliant consultant we saw last week and i am going to ask if we can split his levemir/ or increase it - the only reason i havent was i was specifically told not to - but i am not happy leaving Alex so high all the time - he is fed up and cant even play his drums in case he splits his stitches! lol.
Adrienne, I just cant wait to meet all the families next weekend - it will be amazing that out of 40 or so children the majority of them are type 1 diabetics! Alex is so interested to see others on pumps and how they all work etc.. I hope the kids dont mind! I 'm sure it will be a million times more beneficial than going to clinic!🙂
Sue, i was just explaining why i hadnt changed anything as his consultant had told me not to. It was against my better judgement to be honest as i really think he needs his levemir splitting and increasing - but i dont want to go against what the 'experts' tell me! Also it seems so difficult even getting a cgm for him - i didnt want to rock the boat with this new chap as i think he's brilliant!:D And, yes i know i have loads to learn about pumping - but i have all you lot on this forum and also the great mums on the CWD list!:D Bev
 
Hi bev

Sorry to come to this late -- busy weekend! This looks mega like what E went through 3 weeks ago. Not that it is the same -- but we were absolutely shocked by how much more insulin he needed suddenly, and corrected *exactly* as you are doing, also raising levermir by 30% in one go -- which is not advisable of course, but he was just *so* high it was scary. The first levermir raise seemed to have no effect, but the second one 2 days later began to bring him into range. We then have changed all his ratios, for instance from 1:9 at breakfast to 1:7; lunch 1:10 to 1:8; dinner 1:13 to 1:12. He is now stabilised.

Could be a combination of Alex's op and honeymoon ending? We were told that 5/6 months is a fairly typical pancreas pack-up time... Came to the conclusion that with E it is a combination of this and growth...To give you and idea, he is on 50% more insulin than he was 3 weeks ago: and the increase was made over the course of 10 days. Gulp.

How is Alex today?

But we had to go in very hard, because the corrections seemed hardly to be touching things.

We checked all the pens too, even switched insulin batches.
 
Hi Patricia,
Thanks for your input - it sounds to me as if like you say Alex's honeymoon is over! Last night at dinner he was 22 - corrected with the food. Then at bedtime he was 9 - but then at 11pm he had gone up to 12.5! His waking level this morning was 16! I do really want to increase his levemir - but as i said earlier i am loathe to do it as the nice consultant has told us not to change a thing until we get confirmation of a cgm! I will just have to sit it out until we hear from his team - hopefully very soon. It is reassurring (in the nicest possible way) that your son has had the same senario, at least i know its not something we are doing wrong! How are things progressing for your sons new pump?🙂 Bev
 
Hi bev

Yes, sounds as if the levermir definitely needs to go up. We hit the wall with E's when we realised that he'd not eaten for five hours, and his bgl had gone from 8 (2 hours after novorapid) to 17, no food in sight! It was clear to us then that the fasting level (eg the basal) was way out, so we hiked it up...Similar to Alex's rise to 12 before bed...

I'm sure the consultant will agree to raise. If I were you, I'd insist I guess... Certainly E feels terrible when high, also frustrated and cross about complications. It's just plain bad for people to be high, anyway...

Pump-wise, it looks promising. We are just waiting for the pump to come in, then we will be able to set up an initial appointment with saline. Our relief for this grows daily -- E is now stable, having really quite good numbers (though 3 hypos yesterday -- swimming! exhausting for him) -- but his bruising from injections is just appalling. His legs are covered. We had to stop tummy injections because of fatty lump problems (he was bruised all over there too). Now he is doing up and down his legs, but there is little fat there, and he must bruise easily...Off and on painful for him, looks dire, and hard for all of us to take.

It will be a big haul. We are reading the books. But to have been able to suspend bolus yesterday would have been great with the hypos, must confess.

Off to clinic today. With his two weeks of extreme highs, dread his hba1c. Argh.

Take care. Hope your team ring back NOW!
 
Hi all,
Thought i would give you an update. Alex is still high unfortunately. But on sunday i decided to email the 'nice' consultant to ask whether a) he had any news of a cgm and b) whether he thought i should increase the levemir. I gave him all of Alex's readings over the last week - it was quite scary seeing them all when they were nearly all over 16!
Anyway, he has emailed me this morning and i am amazed! He said he was very happy to go over all the numbers and will send another email later on today with how we should change things. But more importantly, he said they dont have a cgm machine - but have asked the adult dept if we could use theirs - but they havent replied yet. He is so unhappy that we dont have our own that he has made enquiries about buying a brand new one for the childrens dept and hopes to have one soon! He has also given me his bleep number for emergencies!
I feel so happy that he has taken notice of things and seems very proactive with regards to getting the right equipment for the job. I just hope that he stays with our team - he is so positive and makes me feel reassured that he actually knows what he is talking about. I think if he doesnt stay i will ask to be referred to him wherever he is employed! :D

Thanks to you all for your advice - and Patricia you gave me the confidence to 'bite the bullet' and to not just accept that Alex is high - so thank you!🙂Bev
 
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