Not getting any sleep because of highs at night - suggestions welcomed!

[expatmama]

Hi All,
This is my first time posting on the forum and we are desperate for some help. Our son was diagnosed in October last year but we still don't seem to have found the right insulin balance. He was fine during the holidays when we were in the UK but we are now back in Qatar where it is too hot to be outside. He is high every night and even when we give him corrections they don't seem to work and we can be correcting 4 or 5 times a night. He wears a libre 2 sensor but we have noticed that the readings can be quite far off what we read on a prick test. We have upped the lantus, changed the food and correction ratios, tried no carbs at dinner but we just don't seem to be getting anywhere. Hubby and I are exhausted and willing to try anything at this point. Unfortunately a pump is not an option for us at this point. Any suggestions would be much appreciated. It feels like we will never get a full night's sleep again!
Thank you so much.
Desperately Tired!

 

[rebrascora]

Hi. Sorry to hear you are experiencing such tiring and frustrating problems. How old is your son?

Can you post a photo of a couple of typical day's Libre graphs?

When you say, you increased his Lantus, by how much and what happened? Was he hypoing through the day when you increased it? When does he take his Lantus as that might be crucial to sorting the problem? Lantus has a peak of activity for some people at about 5 hours after injection and then it slowly tails off. If your son is needing more basal insulin at night then changing the time he takes it might give him the peak of activity when he most needs it.

It is important to only change one thing at once with diabetes management and give that change time to take effect, usually 3 days and then make more adjustment if necessary.

Is it happening every night? Could it be the Pizza effect where fatty foods like creamy pasta dishes or pizza release glucose much later and need a split dose?

If it is every night then almost certainly basal (Lantus), unless he is midnight snacking. If adjusting the timing and dose of the Lantus doesn't work and he hypos during the day when you increase his dose enough to level out his night time BG then perhaps try splitting the Lantus or ask for a change to Levemir which is designed to be split so that you can adjust the daytime and night time doses separate of each other. For instance I need much more basal insulin during the day and very little at night so I take 22 units as soon as I wake up (before I get out of bed) and only 4.5 units at night although the night time dose can vary a lot depending upon how much exercise I have done the previous days and can go down to 0 if I have been very active all week.

If your son is going through a growth spurt then he may well need his basal significantly increasing, so you might need to keep increasing by 10% several times until his overnight levels stabilize. Getting your basal insulin dose right is key to good diabetes management and overnight levels rising is a very strong pointer to it being his basal unless he has pizza every night! 🙄

 

[Inka]

Welcome @expatmama 🙂 How stressful for you all! Disturbed sleep for any length of time is exhausting mentally as well as physically.

My suggestion would be to consider asking that he’s changed to a twice daily basal insulin. That way you can adjust the daytime and nighttime doses separately. It might be that he simply needs more basal at night. Obviously with the once daily Lantus you can’t do this because you then risk him having too much basal during the day and having hypos. Although it’s an extra injection, a twice daily basal gives so much more flexibility.

The change in routine and temperature could be affecting him, or his remains beta cells could simply have been further reduced (which is normal), meaning he needs more insulin. I’d try to get a twice-daily insulin, then start afresh almost, by doing a basal test to get that right, then doing the meal ratios one by one.

How old is your son? Puberty and growth can also mean insulin needs increase.

 

[expatmama]

Welcome @expatmama 🙂 How stressful for you all! Disturbed sleep for any length of time is exhausting mentally as well as physically.

My suggestion would be to consider asking that he’s changed to a twice daily basal insulin. That way you can adjust the daytime and nighttime doses separately. It might be that he simply needs more basal at night. Obviously with the once daily Lantus you can’t do this because you then risk him having too much basal during the day and having hypos. Although it’s an extra injection, a twice daily basal gives so much more flexibility.

The change in routine and temperature could be affecting him, or his remains beta cells could simply have been further reduced (which is normal), meaning he needs more insulin. I’d try to get a twice-daily insulin, then start afresh almost, by doing a basal test to get that right, then doing the meal ratios one by one.

How old is your son? Puberty and growth can also mean insulin needs increase.

Thank you so much. He is only 7 but is possibly going through a growth spurt. We will look into twice-daily insulin. Thanks again.

 

[expatmama]

Hi. Sorry to hear you are experiencing such tiring and frustrating problems. How old is your son?

Can you post a photo of a couple of typical day's Libre graphs?

When you say, you increased his Lantus, by how much and what happened? Was he hypoing through the day when you increased it? When does he take his Lantus as that might be crucial to sorting the problem? Lantus has a peak of activity for some people at about 5 hours after injection and then it slowly tails off. If your son is needing more basal insulin at night then changing the time he takes it might give him the peak of activity when he most needs it.

It is important to only change one thing at once with diabetes management and give that change time to take effect, usually 3 days and then make more adjustment if necessary.

Is it happening every night? Could it be the Pizza effect where fatty foods like creamy pasta dishes or pizza release glucose much later and need a split dose?

If it is every night then almost certainly basal (Lantus), unless he is midnight snacking. If adjusting the timing and dose of the Lantus doesn't work and he hypos during the day when you increase his dose enough to level out his night time BG then perhaps try splitting the Lantus or ask for a change to Levemir which is designed to be split so that you can adjust the daytime and night time doses separate of each other. For instance I need much more basal insulin during the day and very little at night so I take 22 units as soon as I wake up (before I get out of bed) and only 4.5 units at night although the night time dose can vary a lot depending upon how much exercise I have done the previous days and can go down to 0 if I have been very active all week.

If your son is going through a growth spurt then he may well need his basal significantly increasing, so you might need to keep increasing by 10% several times until his overnight levels stabilize. Getting your basal insulin dose right is key to good diabetes management and overnight levels rising is a very strong pointer to it being his basal unless he has pizza every night! 🙄

Hi Barbara, you have given us lots to think about. We have increased the lantus by 2 from 8 to 10 over the past week. He is still high during the day too so we reckon we might still need to go higher. He normally has his lantus at 4pm and then heads to bed at 7. We don't have a super fatty diet. He does eat a lot of carbs but he is so fussy that he likes his food plain (rice, pasta, etc). We will ask if we can move to Levemir. We try to avoid pizza at night as we have learnt the hard way that we don't have a good night. He has even had a couple of "carb free" dinners but it didn't make a difference. Thank you so much for your advice. We really appreciate it.

 

[Inka]

Thank you so much. He is only 7 but is possibly going through a growth spurt. We will look into twice-daily insulin. Thanks again.

Yes, my son went through a growth spurt around that age, so that’s a possibility. I notice you said correction doses weren’t working - obvious, but have you changed his insulins to new cartridges/pens just in case the insulin has degraded in the heat/travel? With unexpected highs, that’s a good thing to rule out.

I wouldn’t give him a carb free supper. That often leads to highs hours later, makes control more difficult for many people, and, of course, he needs some carbs. While you’re trying to get things right, you could stick to the same or similar evening meals, just to rule out one variable. I often go with protein, green veg plus baked potatoes, simply because they’re easy to weigh and carb count accurately.

 

[SimonP]

If it is every night then almost certainly basal (Lantus), unless he is midnight snacking. 🙄

It could also be a different insulin sensitivity in the evening too, which is what I suffer from - before I realised I'd give expected insulin (split dose) and unless I ate very early I'd be heading to bed with some still active never knowing whether it would work or not (not).

One could tell the difference between insufficient basal and insufficient bolus (due to wrong ratios) by looking at whether levels are stable once they reach a high plateau or whether they keep increasing overnight. Care must be taken that you may also get a morning rise (dawn phenomenon), which you need to handle separately.

tried no carbs at dinner

In the absence of carbs, protein and fat are turned into glucose, so you still need to dose for this, which is confusing. The same comment above holds true. I used to do this and wonder why I kept going up.

He wears a libre 2 sensor but we have noticed that the readings can be quite far off what we read on a prick test.

I would suggest using one of the 3rd party apps that allows fingerprick calibrations. I use XDrip+, there are other options. Some of these also allow you (multiple yous that is) to have the same app and readings displayed on your phones (perhaps Libre also allows this now in the default app) along with high/low alarms, etc. I don't need this, but I'm sure one of the parents of a T1 could comment as to the best setup they have found which might help with your sleep.

Good luck, do feel free to ask more questions and let us know how you get on. I was also 7 when I was diagnosed.

 

[rebrascora]

Hi Barbara, you have given us lots to think about. We have increased the lantus by 2 from 8 to 10 over the past week. He is still high during the day too so we reckon we might still need to go higher. He normally has his lantus at 4pm and then heads to bed at 7. We don't have a super fatty diet. He does eat a lot of carbs but he is so fussy that he likes his food plain (rice, pasta, etc). We will ask if we can move to Levemir. We try to avoid pizza at night as we have learnt the hard way that we don't have a good night. He has even had a couple of "carb free" dinners but it didn't make a difference. Thank you so much for your advice. We really appreciate it.

If he is running high during the day as well as the night, then I would increase the Lantus again, give it 3 days to see if that makes much/any difference and if necessary increase it again. My basal needs doubled over a period of 2 months as my honeymoon period was coming to an end. It was a very frustrating time but I was needing correction after correction to try to keep a lid on it and using masses of quick acting insulin, but a few more units of basal every few days sorted it out in the end and I was back on an even keel again and everything was back to working as it used to, so I would continue to adjust the Lantus by 1 units every few days and see how you get on. If you were getting hypos during the day then a split dose might be helpful, but if you are high day and night then see if you can find a Lantus dose to sort it out.

Always worth considering if your insulin has been compromised by heat or cold, especially in a different climate or during travel. Did you take any precautions with protecting the insulin and carried it in hand luggage or is this insulin which has been prescribed out in Dubai?

 

[SB2015]

Welcome to the forum @expatmama . Sorry to hear how difficult things are at present but glad that you already have some options to try to address the issues that you have raised.

You have already had comprehensive answers pointing towards checking his basal insulin, since the issue is occurring through the day as well as at night. When my Levels are higher I find my corrections don’t work as well, and it feels like nothing will bring them down. It is also very hard to wait for a few days once you have made a change to see if further changes are needed.

I found the switch to a split basal, Levemir, was very helpful. This gave me the option of changing the daytime or evening one without altering the other. The advice is always to get basal changed first. If that is muddled it is hard to sort our carb ratios and sensitivity.

One change at a time is an important idea when we make adjustments, otherwise it is difficult to know what has or hasn’t worked.

Keep the questions coming as there is plenty of experience to tap into on here.

 

[PattiEvans]

In addition to the excellent advice given already, may I suggest you get copies of "Type 1 Diabetes in Children and Young Adults" by Ragnar Hagas And "Think like a Pancreas " by Gary Sheiner. If you can't get physical copies in Qatar you will be a le to get ebooks.

 

[PattiEvans]

Sorry, it’s Ragnar Hanas not Hagas.

 

[Titch2004]

Hi all, this is a really useful thread, thank you for all your advice.

I am also struggling with my 10yo son. Diagnosed 8 weeks ago through the ELSA study so he is/was still in the honeymoon period and we've had none of the nasty DKA preceding the diagnosis. I am also LADA so know what I am doing but the last few nights we have had nasty hypers of 24-26 every night. As he's been int he honeymoon we've not been allowed to give him correctional doses yet so I've had to stay awake and test every 2hrs while updating the PAU at the hospital. I've been trailing giving him his novorapid 20 mins after he eats as he seems to churn through it super quick and then hypo before his body has had a chance to digest the food. He is incredibly active during the day so getting his bolus right at school has been a nightmare but I suspect we are coming to the end of the honeymoon period with these rises. He is only on 2 units of levemir at night so wondering if this needs to be increased too.

Hope your son is feeling better Expatmama

 

[Thebearcametoo]

Hi all, this is a really useful thread, thank you for all your advice.

I am also struggling with my 10yo son. Diagnosed 8 weeks ago through the ELSA study so he is/was still in the honeymoon period and we've had none of the nasty DKA preceding the diagnosis. I am also LADA so know what I am doing but the last few nights we have had nasty hypers of 24-26 every night. As he's been int he honeymoon we've not been allowed to give him correctional doses yet so I've had to stay awake and test every 2hrs while updating the PAU at the hospital. I've been trailing giving him his novorapid 20 mins after he eats as he seems to churn through it super quick and then hypo before his body has had a chance to digest the food. He is incredibly active during the day so getting his bolus right at school has been a nightmare but I suspect we are coming to the end of the honeymoon period with these rises. He is only on 2 units of levemir at night so wondering if this needs to be increased too.

Hope your son is feeling better Expatmama

I don’t know why you wouldn’t correct such a high BG even in the honeymoon phase. We did corrections from the beginning. Kids should be able to eat relatively normally. We kept carbs mostly to around 70-80g per meal at that age but he could have sweets etc included in it. Night time highs are more usually basal related so increasing his basal may be the answer. Your diabetes team should be giving you more advice though as leaving a kid with BG over 20 most nights isn’t normal.

 

[Titch2004]

The diabetes team have been brilliant so I won't speak ill of them. I think because he has been so well up to this point (and I know what I'm doing) we have been happy getting on with it ourselves. They've asked me to see how he goes over the next few days and we'll make a plan on Friday. Worst bit is he's gong to his father's this weekend and he is not great with him so my son is concerned about going and I'm not great about relinquishing that control.

I don’t know why you wouldn’t correct such a high BG even in the honeymoon phase. We did corrections from the beginning. Kids should be able to eat relatively normally. We kept carbs mostly to around 70-80g per meal at that age but he could have sweets etc included in it. Night time highs are more usually basal related so increasing his basal may be the answer. Your diabetes team should be giving you more advice though as leaving a kid with BG over 20 most nights isn’t normal.

 

[SimonP]

Does he/you split bolus for his meals, which should help with the hypo after supper and could also be part of the cause of the hyper - if the food in question is "slow absorbing" and you've had to correct the post-supper-time hypo and have not then rebolused later on (the supper-time carbs are still there being slowly released, and he's just eaten more to fix the hypo)