Advice please

[Lion2012]

Hello i hope all are keeping well.
My sons team suggested 4 units of levemir in the morning and 9 units of levemir in the evening before bed on top of all his novo rapid per meals to prevent massive spikes. This did work well as per his graph I've attached. However last night he crashed massively and the same tonight. Very sudden and fast crash in sugars... He had three Gluco juices.. 5 jelly babies and 4 jaffa cakes but still he wasn't rising in sugars so not like him. His team suggested tweeking his novo rapid insulin to carb ratios which i did to give more carbs per insulin at night still no change please see graphs showing the steady one then the crazy one

 

[ColinUK]

Calling @rebrascora and @everydayupsanddowns to the thread. They may be able to help or call in others who can.

 

[Lion2012]

Calling @rebrascora and @everydayupsanddowns to the thread. They may be able to help or call in others who can.

Thank you mate much appreciated. After football i just cannot control the lows now had a few days of perfect readings but now afyer football he crashes so bad nothing brings him up.. Hes ran out of jelly babies and jaffa cakes now (this eve) having eaten everything... Still ONLY JUST 4.1... I am exhausted

 

[rebrascora]

Hi.

Poor bairn must be feeling shocking with levels going up and down so drastically.
Firstly it would really help if you logged his insulin and food on his Libre so that we (and more importantly hospital staff) can see when things are happening ie when he is injecting and when he is eating.


What time does he take his morning and evening Levemir and do you reduce it after he has played football?

When are the crashes happening relative to when he ate and when he injected bolus and basal insulin?
I can only speak from my own experience as an adult but both bolus and basal insulin need reducing after a lot of activity. I don't know if children are different but personally I need much less insulin during the night than in the morning, so 4 units of Levemir in the morning and 9 units at night sounds like it might be the wrong way around to me. Basal needs tend to be at their lowest during the night as the body is resting and only the vital organs are ticking over, but it does start to rise in the morning as Dawn Phenomenon kicks in. As an example I am currently on 26 units of Levemir in the morning as soon as I wake up.... usually 6.30am and anywhere from 0-6units on an evening.depending upon how active I have been in the past few days. I used to take those at bedtime (11pm) but recently my levels have been rising on an evening so I have been taking my Levemir earlier in the evening (7pm) to help counteract that rise.

The highs look like they might be a timing issue. If I am above 8 I don't eat, otherwise my levels go sky high like that and it takes a lot more insulin to bring them down, so I inject my bolus insulin plus any correction and then wait for my levels to come down to mid to low 6s before I eat or sometimes 5s. That gives the Novo Rapid time to get going before my levels start rising. I think of it a bit like a swimmer having to swim against a strong tide.... If you wait until the tide turns and then use it to help you rather than just diving in and getting dragged out to sea and having to fight your way back. That way you need less insulin because you don't get those highs in the first place. Basically I don't follow a set time scale for prebolusing. I watch my Libre and eat when my levels come into range. Sometimes it means a meal needs reheating in the microwave but it is well worth it in my opinion. Coming rattling down from those highs feels horrible even if you aren't dropping into hypos but it must be 10x worse when they are going really low and needing so much treatment to bring him up.
I always inject my breakfast bolus as soon as I wake up with my Levemir (before I get out of bed) and I usually add a couple of extra units to tackle Dawn Phenomenon because otherwise my levels would shoot up into the mid teens like your son's. Again, I wait to give that insulin plenty of time on a morning to get working before I eat. I know clinicians recommend no more than 20 mins prebolus time but on a morning Novo Rapid needed over an hour to prevent me spiking and it is now 45mins with Fiasp. I found this my very cautiously increasing my prebolus time by a few minutes each day until I found the sweet spot timing to prevent the spike. This timing is extreme and my consultant is very shocked and it is why he changed me to Fiasp, but it isn't a lot quicker for me. I would not recommend anyone else prebolus that far in advance unless they had done what I did and slowly increased it to find the correct timing for them as an individual because obviously there is a risk of hypoing if you wait too long.


I hope/assume you have found other alternatives to give your little chap if you run out of normal hypo treatments.... sugar dissolved in warm milk works as well as anything or a spoonful or two of honey or maple syrup.

I am not sure any of my experience is relevant to your son but hopefully some of it may resonate with you. I find after a very busy day it is like my muscles suck all the glucose out of my blood whilst I sleep so I really have to reduce that evening Levemir dose quite significantly to prevent it and eat some slow release food at bedtime like some nuts or cheese.

 

[ColinUK]

I’m sure that even having you respond @rebrascora helps.
You’ve a wealth of knowledge and experience about being T1 and you give clear accounts of your own experience.

I’d imagine that it’s incredibly frustrating and also scary trying to fund that sweet spot for Leo and I know if I ever have to use insulin I’d really value your guidance.

Barbara are there any others on here who you think might be able to help with advice and guidance? I’m not as au fait with who’s T1 or has T1 kids?

————————————

Oh there is a “parenting” section on the forum which may be of use. I don’t tend to look in there and see what’s going on as all I’ve ever cared for are plants and cats but it might be worth exploring as I’m sure the combo of child/insulin/sports has come up for others but probably without the specific medical concerns that Leo has to contend with.
Cx

 

[helli]

@Lion2012 what happened differently between the days when the change in Levemir dose worked and the days when they didn't.
It looks like there was something different when his went high - did he eat more carbs that day or did train for footie that day (or not train), did you correct the high (and stack insulin), did he have a stressful time at school or argument with his Dad when he got home or ...?
It is frustrating but we need to look for patterns to understand what is causing a high and a drop.

We also MUST test highs and lows from Libre before making any corrections as it is most accurate between 4 and 8 (or 9).

Sorry, I can make any suggestions without understanding what happened differently - there is usually a reason for a change in patterns. Unfortunately, this could be harder to spot with kids because we are not with them all the time and they are growing.

 

[trophywench]

@Lion2012 what happened differently between the days when the change in Levemir dose worked and the days when they didn't.
Unfortunately, this could be harder to spot with kids because we are not with them all the time and they are growing.

Soooo - what were Leo's growth hormones doing those days?

Just wondering because I don't even have any knowledge whatsoever of what effect they have on BG and though I do know what female hormones do to BG - have no idea whatever whether male hormones can cause the same affects.

 

[everydayupsanddowns]

Sorry to hear your little one is having such a torrid time.

Those ‘alpine’ graphs are exhausting! And it must be very worrying for you.

But you are working really hard and doing your best. So don’t be hard on yourself. Diabetes does occasionally just chuck it’s toys out of the pram, and you need to work out what the ‘new rules’ are - but those are likely to shift and change too.

Sometimes I find it helpful to work at a BG wobble from the other end - so that if it is the lows I am wanting to fix, I look at tackling the highs - because it is my (or my body’s) reaction to those that is fuelling the later drop. Quite a lot of diabetes management can feel like manoevering an oil tanker - you make an adjustment, but don’t see the impact for hours or days. And in the meantime it can be all too tempting to assume whatever it is isn’t working and go again.

Lows do generally result from too much insulin at a particular point. But after Exercise the body can slurp up glucose to replenish stores, so it can be a double whammy on top of the active insulin. Plus insulin sensitivity can be increased for 24 hours or more after exercise.

Keep plugging away at it. Keep plenty of notes and look for the patterns.

 

[Lion2012]

Hi.

Poor bairn must be feeling shocking with levels going up and down so drastically.
Firstly it would really help if you logged his insulin and food on his Libre so that we (and more importantly hospital staff) can see when things are happening ie when he is injecting and when he is eating.


What time does he take his morning and evening Levemir and do you reduce it after he has played football?

When are the crashes happening relative to when he ate and when he injected bolus and basal insulin?
I can only speak from my own experience as an adult but both bolus and basal insulin need reducing after a lot of activity. I don't know if children are different but personally I need much less insulin during the night than in the morning, so 4 units of Levemir in the morning and 9 units at night sounds like it might be the wrong way around to me. Basal needs tend to be at their lowest during the night as the body is resting and only the vital organs are ticking over, but it does start to rise in the morning as Dawn Phenomenon kicks in. As an example I am currently on 26 units of Levemir in the morning as soon as I wake up.... usually 6.30am and anywhere from 0-6units on an evening.depending upon how active I have been in the past few days. I used to take those at bedtime (11pm) but recently my levels have been rising on an evening so I have been taking my Levemir earlier in the evening (7pm) to help counteract that rise.

The highs look like they might be a timing issue. If I am above 8 I don't eat, otherwise my levels go sky high like that and it takes a lot more insulin to bring them down, so I inject my bolus insulin plus any correction and then wait for my levels to come down to mid to low 6s before I eat or sometimes 5s. That gives the Novo Rapid time to get going before my levels start rising. I think of it a bit like a swimmer having to swim against a strong tide.... If you wait until the tide turns and then use it to help you rather than just diving in and getting dragged out to sea and having to fight your way back. That way you need less insulin because you don't get those highs in the first place. Basically I don't follow a set time scale for prebolusing. I watch my Libre and eat when my levels come into range. Sometimes it means a meal needs reheating in the microwave but it is well worth it in my opinion. Coming rattling down from those highs feels horrible even if you aren't dropping into hypos but it must be 10x worse when they are going really low and needing so much treatment to bring him up.
I always inject my breakfast bolus as soon as I wake up with my Levemir (before I get out of bed) and I usually add a couple of extra units to tackle Dawn Phenomenon because otherwise my levels would shoot up into the mid teens like your son's. Again, I wait to give that insulin plenty of time on a morning to get working before I eat. I know clinicians recommend no more than 20 mins prebolus time but on a morning Novo Rapid needed over an hour to prevent me spiking and it is now 45mins with Fiasp. I found this my very cautiously increasing my prebolus time by a few minutes each day until I found the sweet spot timing to prevent the spike. This timing is extreme and my consultant is very shocked and it is why he changed me to Fiasp, but it isn't a lot quicker for me. I would not recommend anyone else prebolus that far in advance unless they had done what I did and slowly increased it to find the correct timing for them as an individual because obviously there is a risk of hypoing if you wait too long.


I hope/assume you have found other alternatives to give your little chap if you run out of normal hypo treatments.... sugar dissolved in warm milk works as well as anything or a spoonful or two of honey or maple syrup.

I am not sure any of my experience is relevant to your son but hopefully some of it may resonate with you. I find after a very busy day it is like my muscles suck all the glucose out of my blood whilst I sleep so I really have to reduce that evening Levemir dose quite significantly to prevent it and eat some slow release food at bedtime like some nuts or cheese.

Hi Barbara i hope you are keeping well xx

Thank you so much for your reply and very important advice to me and my son.
At the moment it seems like an improvement is made for one or two days and you feel like you have found a target and routine.. Then out of the blue more crazy readings for a few days. Just impossible.

His health care team now suggest 7 of levemir in the evening and 4 in the morning.
He has a morning snack at 10am at school and tends to drop immediately afyer this... I have already adjusted the am bolus to 1 for 8 so no real room for any more adjustment.

With the slight reduction of levemir at night ill see how it goes. Also his team have advised reducing night levemir when he's been football training... And on Sunday mornings reduce the am levemir to allow for game time... Ill see how all this goes.

It was such a lovely picture seeing this line on the graph stay within the GREEN throughout the whole day.... If only for a couple of days

Thank you again

Paul

 

[Inka]

I have already adjusted the am bolus to 1 for 8 so no real room for any more adjustment.

Hi @Lion2012 What do you mean by the above statement? Ratios can be anything 1:8g, 1:7, 1:5, 1:12g, 1:3g, 1:30g - you get the idea!

What might be helpful is to keep a notebook for a few days, noting down what’s happening with regard to food, exercise, etc etc. That way you can get clues as to what to tweak eg football might need lowered basal and/or lowered bolus beforehand, a snack afterwards.

If he’s having to pile in loads of jelly babies and extra carbs, then it looks like too much insulin prior to this somewhere. Also, Jaffa cakes aren’t particularly helpful. Try more substantial carbs for persistent lows. When things go wrong, sometimes we need to pack away a fair few carbs. Sometimes the low will cause a rebound high, but correct that cautiously ie reduce your corrrection dose, else you’ll get on the horrible diabetes rollercoaster.

 

[Lion2012]

I have already adjusted the am bolus to 1 for 8 so no real room for any more adjustment.

Hi @Lion2012 What do you mean by the above statement? Ratios can be anything 1:8g, 1:7, 1:5, 1:12g, 1:3g, 1:30g - you get the idea!

What might be helpful is to keep a notebook for a few days, noting down what’s happening with regard to food, exercise, etc etc. That way you can get clues as to what to tweak eg football might need lowered basal and/or lowered bolus beforehand, a snack afterwards.

If he’s having to pile in loads of jelly babies and extra carbs, then it looks like too much insulin prior to this somewhere. Also, Jaffa cakes aren’t particularly helpful. Try more substantial carbs for persistent lows. When things go wrong, sometimes we need to pack away a fair few carbs. Sometimes the low will cause a rebound high, but correct that cautiously ie reduce your corrrection dose, else you’ll get on the horrible diabetes rollercoaster.

Thank you... Yes, sorry 1 unit per 8g of carbs for breakfast bolus time blocker set at 0530 to 0900... Breakfast at 7am...