advice re bolus/basal

[brightstar]

My daughter is 9, T1 with 18 months, but honeymooning at rest from what we can tell. Her last insulin, Novorapid, is at dinner time and nothing until morning, very small units, or so we are told.
We hope to go on pump soon, so we are doing basal/bolus regime.
Levemir/Novorapid

I cannot control the ratios and the Basal right now.
I am hoping I can arm with information before I go back to the clinic again.

My questions,
I give Lev at 8am. NR at the same time, (ratio going smaller and smaller)
When I test after 2 hours it is high (say 8.5) in 3 hours it is 5....
I am being told it is the Lev that is too high
So I reduce the Lev and it High bananas for the day.

If I increase the NR dose, then after the 3 hours she will sink lower...

Afternoons are another problem area, mostly lows, so me having to reduce the Lev, so she is waking up high.
We have had to stop split dosing and only giving 1 unit in the morning now..otherwise the nighttime lev will go hypo during the night.

I am really at wits end.
Is it possible my daughter is having a delayed reaction to the NR and perhaps her peak is 3 hours? (so in fact her Lev is fine?)
I am being told by her nurse there is no way the NR is kicking in at 3 hours?

She seems to be insulin resistant in the morning, currently 1:5, lunch is 1:15 and dinner 1:20.
Is this normal?

We seem to be out on our own with this one, diabetes nurse, although good, is impossible to catch for information and support and have worked the ratios ourselves, it's been a long road!

I'm hoping some of those of you who have better knowledge than me can help me out, even in the tinest possible way.

Jay

 

[leggott]

The only way to work out which insulin needs adjustment is to do some fasting tests. Perhaps one morning you could give her breakfast a little later or just give her some non carb snacks like scrambled egg etc. Having said that, her morning bloods seem ok to me as the guidelines for children are under 9 two hours after eating and between 4-7 before meals. We did have a bit of an issue with this with both my children when they were on injections so we gave them a slightly higher dose of insulin with their breakfast and then gave a small snack 2 hours later to stop them dropping too low 3/4 hours later.

If she is going low in the afternoon, then this may be the insulin given at lunchtime. Again, I would suggest fasting to assess whether levemir or NR is wrong, although you've said that if you lower levemir she is high at other times.

Ratios will vary whether or not you are on MDI or pump therapy so don't worry about that.

I'm afraid it will be a lot of trial an error. On the positive side, it sounds like you only need to do a bit of tweaking as you are are not a million miles out. You have also identified where the problems lie and are carb counting so you have already done so much and are close to resolving this issue.

 

[leggott]

forgot to say that the action time of Novorapid does vary from person to person, but typically it is peaking at around 2 hours and for most would have pretty much done it's thing after 4 hours.

What is her control like overnight and how many units of levemir does she have at 8am?

 

[brightstar]

She has been on 3 units of lev with a while, but because the hypos were literally all over the place, we reduced little by little, down to 1 unit every morning, but more hypos the last 3 days so we brought it down to .5 lev.

Here is what a typical day would look like

Waking BS 7.4
Lev 1 unit
Carbs 21g= 4 NR (1:5)

2 hrs later
BS 10.4
1 hr later
BS5.0

Carbs 45g = 3 NR (1:15)

2 hrs later
BS 6.7
1 hr later
BS 4.3

Snack of 12g

2hrs later
BS 4.1

Dinner Carbs 50g = 2.5 NR (1:20)

2hrs later
BS 8.0

through the night, 1am BS would be 9-10
4am BS would be 7.2
8am waking BS 7.4


Those lows have gotten increasingly lower over the last few days, which is why I reduced the Lev to .5. But today most readings in the day were BS 10-11.5 but as usual, 2 hours after the NR she was 11 and then went down to 5.2 going into the third hour...on only 0.5 Levemir???

Thank you for taking the time to respond,
all advice will be taken on board, good and bad!

 

[leggott]

To be honest her bloods are pretty good and as you know controlling diabetes in a child is a challenge to say the least!

Her overnight is not too bad. her blood does go up in the early hours, but it would be helpful to know what her blood is at say 10/11pm ( 4 ) or so hours after she ate her evening meal as the reading at 1am of 10, may be a result of her evening meal insulin being slightly wrong. Her blood does fall later in the morning though and that would be the levemir.

The first thing that I would tackle is the levemir. if you do some fasting tests throughout the day and night you will see where the problems lie. Hopefully you will then be able to make the necessary changes to the levemir to get this insulin as accurate as possible. This however, is easier said than done as although levemir is supposed to give you a fairly flat profile ( it doesn't) and her body will be producing difference levels of glucose throughout the day and night. Something else to factor in is that because she is on such small doses the drips of insulin that are lost when you inject, will represent a bigger proprtion of the overall dose - if that makes sense! So sometimes she is getting more levemir than other times, even though you are dialling up the same unit dose.

If you can get to a situation where her overnight control is good, then you can deal with the lows in the day with small snacks or adjustments to her novorapid at meal times. I know this may not be an ideal solution, but I found with my kids, they quite liked having a small snack mid morning and afternoon without having to have an injection for it.

This is a problem that lots of diabetics face - if they make changes to basal insulin to rectify a problem at one time, if can causes a problem at other times of the day. Splitting the levemir dose can often deal with this issue but for your daughter on such small doses of levemir would not be an option. This is where pumps come into their own as you can set the basal insulin on an hourly basis to factor in these changes.

 

[Jen&Khaleb]

Would it be right to say your daughter is only on about 10.5 units (total) per day? My son is also on Levemir/Novorapid. I think it is just very hard during the honeymoon period to manage dosage. Have you talked about stopping the Levemir and just using the Novorapid for a while. It hardly seems worth piercing the skin for 1/2 unit. Or maybe it would be better to give the Levemir at night so you don't have such high insulin requirements in the morning and the Novorapid will cover the day. I think Novorapid lasts about 4 hours in my son but most of its action happens in the first 2 hours. Your levels look pretty good and I wouldn't worry about the odd one going out of range. On basal/bolus there are usually times in the day when insulin is running a bit short and other times overlapping.

 

[brightstar]

Yes, J&K she's only on approx 10.5 a day.
Diabetes nurse says the consultant is hesitant about taking her off the levemir altogether.
I would agree with the fact that she might do better with having the levemir at night time, but I wonder would she still get lows then too, possibly worse as she's not eating at all. She seems to create her own insulin at about 3-4am from what I can gather.

I am trying to find out when this honeymooning will phase out via websearch. She seems to be on less and less as the months go on and 18 months seems a long time? We did find out exceptionally early, maybe that has something to do with it.

The only thing I'm thinking of now is, is this a good or a bad thing to be this sensitive or to need this little insulin when going for a pump? We were hoping to get on that track in the next few months, I wonder will this set us back or give us better fighting power to get one quicker?

Anyway, I'm starting to ponder now!

This whole diabetes thing is consuming!

 

[leggott]

it will help with your application for a pump, but if you can work out what the problems are now, the pump will give you the tools to solve these issues. A pump will need to be programmed hourly with basal rates throughout the day and night so it helps before hand to have an idea of what the insulin requirements are.

Pumps are fantastic and I would never be without ours, but they are not the magic answer. They have to be programmed and a child's requirements are constantly changing, so you will often be making changes to get things right. We are currently having problems with our daughters nightime control and are testing at 10pm, 12 and 3am at night and have been doing so for the past week, we are now a bit closer to resolving the issues, but even with the pump it has been hard going.

I hope you can resolve the problems you are having and as a parent of 2 diabetic kids and a husband also with type 1, I totally understand the frustrations you are having and the desire to achieve good consistent control.

 

[brightstar]

Well, after a week of taking all the lows after 4 hours after Novorapid, it was decided it was the Levemir that was too much, took her off the 0.5 units of it (she had her last 0.5 yesterday, over 30 hours ago) and she has been falling the same as always 4+ hours after the last shot of Novorapid.

So, I guess this could mean either two things, which are, 1. the novorapid is lasting longer in her body than the standard hours ....or 2. She is making some dramatic recovery to produce her own insulin now, during night all the time and day time now.

which is possible?

I'd love some feedback to your ideas and thoughts on this one?!!!

 

[leggott]

You could reduce the novorapid with meals or give a small snack in between meals to stop her falling two low.

 

[brightstar]

Thanks.
Yes, I am increasing her ratios again.
The thing with the snack is though is she has a small appetite as it is, she already gets a 10-12g snack after school, mid-morning etc, so by increasing it, she will eat less of her main meals, vicious circle!
I have also talked to her diabetes team this morning and it was suggested that in some, the Novorapid can last up to 5 hours and it may be giving a kick at the end as it dies out...????
It would only take me to have the daughter that is extra sensitive to Novorapid!!!!

 

[Jen&Khaleb]

There are other short/medium acting insulins that may suit a little better. They may last longer but have less of a sharp peak.

 

[danielle0106]

hi my son is 9rs old,and we have been told to by scales to count his food, never done it b4 ,havent got a CLUE where to start at all.
last night he had his tea and then 2hrs later did a blood test and he was 7, had a bath and with in 20 mins he felt low and he had dropped to 2.1
the scarey thing about my son he doesnt feel low until he gets in the 2`s or even 1`s
he has a school trip coming up where he will b away from home for 2 days and part of me doesnt want him to go for the fact that he doesnt feel low at the right time

 

[Jen&Khaleb]

Danielle0106, the bath often sends my son hypo. Especially in Winter I am sure to give him his supper before he goes in or for him to bath straight after dinner and I don't let him spend too much time in there. As for camp it would be best if he would commit to testing every couple of hours and reporting the information to someone else who whould be in charge of making sure he is ok. Someone needs to test him at night and he need to have higher blood sugars while at camp with all the activity. Reduce basals and carb ratios as well and treating even 5's with some fast acting glucose. Will they get you to write out a plan for camp?

 

[danielle0106]

thank u so much it makes sence really when i think about it,i will write a new care plan for school and tell them to treat 5 as low and 12 as high,do u think this will make him more aware when he is low around 3 or 4 after a while.
i sound so stupid but my sons nurse is no help what so ever and when he speaks to me its like he isnt speaking in plain english lol.
my mum bless her has joined diabetes uk to find more answers out as well.

 

[CarbsRok]

Hi Danielle0106
Tell your sons nurse you do not understand and to please explain in a manner that you do.
Do you know how many carbs there are in the food he eats? Have carbs been explained to you? If you can tell us what the carb value of his meal was or even the weight of the foods we can work it out for you. We also need to know how much insulin he had for the meal

 

[Jen&Khaleb]

I think with kids you need to be as flexible as possible. Sometimes this is going to mean keeping levels a bit higher to cover exercise and after exercise you might find you stop some of the lows by replacing carbs straight away regardless of the bsl at the time. An example might be a bsl of 10mml and he's just done an hour kicking a ball in the yard. If you leave it you might see some hypos in a couple of hours time but if you give him half a muesli bar or a few crackers straight after the exercise you wont get the hypo later. The more you can avoid hypos the better chance you have of getting some awareness.

 

[brightstar]

Danielle0106, my daughter has a phone and texts me her readings when she is out, or in school. There has been no issue with her having it with her, in fact, I'd have an issue if someone taking care of her would have an issue!
My daughter would also go hypo in the bath if it's an hour or so after eating, I end to get her into the water straight after a big dinner and nice dessert!

We are back on Levemir morning and night again, she was up in the mid teens. Night time is bad again waking at 10+
I have reduced the ratios, but I'm struggling to keep her down all day.
I hope tomorrow brings better results!
I suppose I have to expect days like this?
She has had no school today also, so physical activity is zero!

J&K, or anyone else, can anyone advise me of shorter quick acting insulins?
Diabetes nurse said there is no other on the market 'as good as Novorapid', but it's no good to us right now!!!

 

[Jen&Khaleb]

Novorapid is the fastest. It does start to work after 10-15 minutes and peaks at 2 hours. It will continue to last for 4-5 hours in total. Hopefully you will come out of the honeymoon period and be able to set your basal and bolus levels and not having them changing all the time. I can imagine how difficult it is for you to account for the possibility that she will produce either a little or a lot of insulin on her own. You really need some psychic ability.