Expecting too much?

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ruthelliot

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I've been trying really really hard this last few months ( not that I wasn't before!) to get better control with Ben. His Hba1c hovers between 8.2 and 8.5 but with lots of daily swings. At his last hospital appointment we got a lot of good advice but i now feel we're struggling even more. The biggest problem seems to be stopping him going high at night and waking up high without making him hypo late morning/lunchtime. For 3-4wks there we were really struggling with mid morning spikes though this would result in good levels at lunchtime. He felt rubbish though and in the last week we have got his mid morning levels down - and as a result a much happier wee boy - but regular hypos at lunchtime - in fact he nearly passed out yesterday at nursery - keeps them on their toes! Nightime is variable just now but I suspect if we drop his levemir he will creep up at night again. We have tried endlessly playing about with amount of supper types of cereal etc. {Part of the problem I think is that a half unit of novo can make a huge difference and so we get to the stage of trying to play about with a few grams here and there. Sorry for warbling on. Basically should I be expecting to be able to get nightime and the morning period both well controlled most of the time or should i basically accept that if one area is good another has to suffer a bit.
 
Hi Ruth,sorry to hear of the problems you are having. I know my parents found it really hard when I was a child. In those days we didn't have Hba1c results but I reckon mine would have been pretty bad. Does Ben have a split dose of Levemir or just once a day? I was just wondering because a split dose might possibly give you a bit more flexibility. I'm very sensitive to a small change in insulin dose so I know how frustrating and difficult it can be. (I'm 44 though now!) I'm not being a lot of help to you but just wanted to say all you parents deserve a medal for doing your very best in such tough circumstances.x
 
I can't help much on your question Ruth as I have no such experience to draw on. I do know that, the younger the child, the more difficult it can be because there are so many extra variables involved. Has Ben been considered for a pump? I've heard bev talk about very young children on pumps and it might give you that extra flexibility you need.
 
Ruth

Forgive me, I don't know if this will apply in your situation at all, but I have wrestled with my basal for much of this year, having failed to solve the issues I was having with various 'supper' attempts.

As flutterby says a split dose may well be worth discussing with your team. For me what worked was simply changing the time of the injection from night time to morning (though my problem was more going low overnight). For me at least, timing and dose were crucially linked. A stable approach to basal for me (which I can vary relatively easily up or down a unit as needs change) has meant I can happily go to bed on modest numbers without supper and without any apparent overnight lows.

Hope you manage to find a way forward soon
m
 
It sounds like a pump would sort all this out - but in the absence of a pump you could try other things. Is the levemir a split injection as this might help with the high's at night - it is *supposed* to last for 24 hours - but it rarely does - so by splitting it you can help spread out the profile.

Breakfast spikes - when are you injecting - and what is Ben eating.

Are you testing at 3am - I am wondering whether there is a hypo in the night and the high may be a rebound.

Having one good level doesnt mean you have to accept a bad level in return. There are many things you can do to try to get levels under 10. If you want to post a whole day's level and food eaten and ratio's, I am sure we can all see if there is room for improvement - sometimes it is hard to see it for yourself and it takes a third party to spot it.🙂Bev
 
Thanks for the advice guys (and moral support).
Ben only gets levemir at teatime now, he used
to be on split dose but it was thought there was
an overlap problem which contributed to increased
hypos though I have been wondering lately if it
would be worth trying again. He has suffered with
night time hypos on and off from day one but we
often test at 3 so catch most now before they happen
but poss still the odd rebound though nights very unpredictable
just now. We've all but begged for a pump, even offered
to pay for pump and any costs ourselves and while we've
been told he's a great candidate ours is one of the
worst boards for funding pumps and so far it's a no. Bev he gets
cereal (usually shreddies,cheerios or multigrain krispies nowadays)
and either a banana or a few dried apricots. Its the one time
we do inject before he eats. Would be great if i could do that with
his results as I feel maybe I'm almost to bogged down in it all just
now to make sense of it . Thanks all.
 
Ruth

Get your consultant to put it in writing that he is a great candidate - if the consultant says he needs one/should have one, by law the PCT have to provide funding. With it in writing you can take it above your team's heads.

The person at the very top of the chain as to 'who gets funding' or not is the consultant. You could also try contacting the pump advocacy group INPUT - they have helped me loads in my fight for a pump 🙂

I can't understand why they would say no to you self funding though?? Sounds more like a fear of pumps at the clinic to me!

Also wanted to say - you parents are amazing.
 
Shiv,
I think the rules are different in Scotland and not sure if INPUT would be able to help - but it would be worth contacting them as they are the people 'in the know'.
It does sound as if there is a problem with the basals and the only way to sort this out would be to have a pump. I understand that you want to fund it - but do you know how much the consumables are - because even if you buy your own pump the hospital wont fund consumables as once you start to self fund they wont give you anything.

I dont know how referrals work in Scotland - but here you are allowed 'patients choice' and are allowed to move to another hospital - you dont have to give a reason - you just tell them which hospital you would prefer. Once at your new hospital you will get a pump and they will send the bill to your PCT.

If I were you I would join the CWD list as there are a group of parents from Scotland and they are fighting hard to increase the amount of pumps made available to children there as they have the lowest uptake of pumps in the UK. ( I think)

For now, I would suggest that you inject Ben at least 10 minutes before eating - this has an amazing effect on any spikes - it doesnt completely get rid of them - but it does reduce them. I know you will feel worried doing this - but this is what the top experts recommend (Gary Scheiner who wrote 'think like a pancreas'). (dont do this if he is hypo though).

If you are not sure whether Ben will eat the whole plate of food then you can give him a 'down payment' of say perhaps half the full amount of carbs - and then if he eats it all just give him the rest.

What levels is Ben going to bed on.🙂Bev
 
Last edited:
ruthelliot said:
He has suffered with
night time hypos on and off from day one but we
often test at 3 so catch most now before they happen
but poss still the odd rebound though nights very unpredictable
just now...
Click to expand...

Hi Ruth

Have you ever tried injecting the Levemir in the morning, just before breakfast? If nighttime hypos are a problem it might be that you can shift the timing of the activity profile so that Levemir is 'fading away' during the time when nighttime hypos might happen. The only thing to wrestle then is wanting to eat breakfast when the new levemir dose is still during onset, but leaving a small gap between breakfast bolus and eating seems to work for me.

You may have tried this already, or the split dose may work better, but it is another option which worked better for me that a split.

Hope you have luck with your ongoing pump mission though. That sounds by far the best option for you.

M
 
Thanks everyone.
Bev - he can be anywhere between 4 and 14ish at bedtime - dependant on what hes had for dinner - his dinner novo is usually 1 +1/2 - 2hrs before we check him for bed. He is currently getting 20g for supper which if i'm honest is a bit more than I think he needs (assuming he wasn't diabetic). When we check him at midnight he can be anywhere from 6ish (occ lower) to high teens. We've been told to try and not feed him unless he's below 6 which we've been sticking to though if he's below 12 we check him another once or twice through the night, if he was below ten we often end up having to give him another small snack. some nights his blood hardly moves or even goes up a few but other nights he can drop by 7 or 8. Supper is pretty consistent and i try to make sure its fairly low GI. Obv the days activities etc will affect things but its often impossible to see a reason for the lows (or highs).
 
It sounds like you are doing all you can to keep levels as tight as possible - I just wish you could get Ben on a pump - this would help you so much and make life easier to adjust to activity and all that a young child gets up to.🙂Bev
 
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