Son aged 9 newly diagnosed with Type 1 DM - large post meal spikes

[njinglis]

Hello!

New to this game (very sadly). Son diagnosed 6 days ago and just fitted with a Libre. Is showing huge post meal spikes up to 20, and then back down to within normal (ish) limits for premeal blood glucise. Understand that the type of carbs have an influence and ratios may need to change and will talk to the diabetes team, but wasn't sure how common this was. I guess trip to dentist today probably didn't help either. Was a bit worried he might be insulin resistant?

Would be great to hear experiences of others.

 

[Inka]

Welcome @njinglis 🙂 Don’t panic too much about highs early on. Things will be very up and down - literally.

What insulins is your son on? Once you’re settled (and that can take some time) you’ll find that injecting the meal-time insulin at the appropriate time will help stop spikes.

 

[Inka]

Tagging @Bronco Billy and @Sally71 who are parents of a Type 1 child, but there are other parents here too. Has anyone recommended this book to you? It’s excellent - for all Type 1s whatever their age:

Type 1 Diabetes in Children Adolescents and Young People by Ragnar Hanas

The important thing to stress is that Type 1 is not a condition where you aim for perfection - because that’s not possible. I’d also say that things change - and change quite often. I’ve had diabetes for almost 30 years and yet I still need to change my basal insulin and change my ratios a number of times a year. So much affects blood sugar - sleep, weather, hormones, illness, etc etc. I know that’s not relevant to your question but I really wish I’d understood that as I got very stressed after diagnosis thinking I was doing something wrong.

 

[njinglis]

Thanks so much Inka. On Novorapid before meals and Lantus for long acting. Thank you for the tips and the book suggestion - will take a look .

 

[helli]

@njinglis welcome to the forum.
Diagnosis at any age is not good but diagnosis as a child is rubbish.
There is a lot to learn so don’t expect to get everything right at the start… and, as @Inka said, don’t expect perfection. We are trying to do the Jon of a major organ with inferior tools - injected insulin does not work as fast as the stuff a healthy pancreas produces.

If your son’s levels return to normal, he is not insulin resistant. It Is probably a matter of timing. Injected insulins work at a fixed rate.
If you Google “Novorapid profile” you will see a graph showing the speed and length of the Novorapid potency. Generally, it peaks after about 20 minutes and remains active at lower levels for about 4 hours.
The rate at which the carbs we eat are absorbed vary according to what we eat. We use fast acting carbs to treat hypos. On the other hand something like pizza with lots of ft will take longer to absorb.
Ideally, we want the bolus peak potency to match the peak time when the carbs we eat are absorbed. If the insulin peak is too early, we go low, if the insulin peak is too late, we go high but come down to normal levels. This is likely to be what is happening with your son.
So, you could try to inject your son’s bolus a little (start with 5 minutes) earlier to get the two peaks to match up … or at least, be closer.
It is not unusual to find the the pre-bolus time varies per meal. Many find they need to bolus earlier for breakfast than other meals.
We are all different so only trial and error will tell.

The other thing to remember is that Libre s inaccurate when high or low. It is likely your son is not peaking as high as Libre says.
This is why the advice is to always check highs and lows with finger pricks before correcting.

Good luck. Feel free to ask more questions. Someone has probably been there before.

 

[njinglis]

Thanks so much @helli - will give it a go! We are doing 15 mins prior to meals but will try 20 mins. Really appreciate the tips. Guess there is going to be quite a lot of trial and error!

 

[rebrascora]

Guess there is going to be quite a lot of trial and error!

We like to think of it as "trial and improvement", but in my opinion, experimenting.... with a close eye on keeping safe.... is key with diabetes, because what works for one person, doesn't necessarily work for another.

Sympathies to your son. Going up to mid teens or above and then coming crashing back down later isn't pleasant. As mentioned, breakfast can be particularly tricky to get the timing of the insulin right. For me it took about an hour and a quarter with NovoRapid but now just 40-45 mins with Fiasp which is a faster acting insulin. I should say that my consultant was absolutely shocked that my morning insulin needed that much head start but he couldn't argue with my results which was why he changed me to Fiasp. Most people would hypo long before that, but that is what works for me. For other meals it is just 15 mins, so as @helli says don't assume the timing is the same for each meal and if I wake up in the 4s and 5s I will need slightly less time between bolusing and eating but if I am 7-10 when I wake up ie a bit above range, I may need a bit longer. I bolus as soon as I wake up and before I get out of bed so that the insulin has time to get going because it takes so long for me.

Just really wanting to give you an idea of just how much it can vary between individuals, because the standard advice of 10-15 mins p[re bolus time is just a reasonably safe guideline, not an absolute rule.

 

[njinglis]

Wow! @rebrascora I hadn't realised there could be that much variation. Thank you for sharing that.

 

[rebrascora]

Wow! @rebrascora I hadn't realised there could be that much variation. Thank you for sharing that.

Neither had my consultant (He was gobsmacked), but there is at least one other person here on the forum who needs similar very lengthy pre-bolus timing, so it may not be as extreme as we might think. My gut feeling is that many people don't experiment with the timing that much, so whilst it is reasonably common knowledge here on the forum to do a bit of testing and adjustment to find your own sweet spot timing, I don't think many people feel it is safe to go beyond the 20-30 mins mark and of course, for many people it wouldn't be, which is why just adding a few minutes each day is important until you find the right timing for you.... or in this case, your son. Lots of testing after injecting (Libre is a game changer in this respect) is really important.

 

[Thebearcametoo]

You are in such early days I wouldn’t change anything just yet. His team will look at all the data - with the Libre it gives you way more data than if you were just finger pricking which is very useful but can cause a panic. Your team are best placed to know what adjustments to make and it may be that the lantus needs to go up or the bolus timing needs adjusting and that will then make post meals spikes less extreme but if he was just on finger pricks you wouldn’t know about the post meal spikes and as he is in range before meals then you’re doing really well right now.

As has been said Libre tends to be less accurate once you get higher and it may be that a finger prick would put him much lower but right now you don’t need to worry about that. In the first few weeks just keep doing what you would usually do for meals and let him eat what he would usually eat and that will give your team the right data to then suggest changes to food, insulin, timing etc. You’re not aiming for perfection at any time with diabetes just more time in range and at this point in his diabetes journey it’s all just about data gathering. As long as you know what to do with a hypo just keep doing what your team have said. If you’re concerned at any point do contact them on the out of hours number and they will chat about whether you need to do anything different.

 

[Zepherine]

Found this thread really interesting and I have been Type 1 for 18 years! Which goes to prove you never stop learning and individuals have very different responses.
I spike after breakfast more than any other meal and it was suggested I bolus 10 mins before. I will have more confidence to play around with that time after reading your comments Rebrascora.
Even 40g of porridge plays havoc....
I was interested in the change of insulin to Fiasp. I have been constantly bringing this up since I heard about it but at my last consultation the DSN said it wasn’t any good (not her exact words) so was a bit miffed as she didn’t explain her comment.
My best wishes to you njinglis in a trying to do the best for your son

 

[Inka]

@Zepherine I need to bolus 30 mins in advance for breakfast. About double the time in advance of other meals. It’s very common. When I was pregnant and had the usual pregnancy insulin resistance, I had to bolus almost an hour in advance.

 

[rebrascora]

@Zepherine I am on my second attempt with Fiasp and whilst it is a bit quicker than Novo(Notso)Rapid it does come with some quirks and it is certainly not as fast acting with me as with some other people. My first attempt, I gave up after 2-3 months with frustration, but I promised myself I would give it a full 12months the second time and after about 4-5 months I started to get to grips with it a bit more.... Getting past the 3 month stage was hard work and if I hadn't kept at it, I might have been inclined to agree with the nurse. It is hard to pinpoint exactly what was causing me the difficulty with it (maybe I am just a slow learner) and having Libre definitely helps enormously, but many people do experience this "difficulty" from other posts on the forum. The big breakthrough for me was being more "confident" or "brave" with it. Ie using more than I felt I needed to. Not huge amounts, but just a unit here or there more than I expected. And with corrections, they sometimes sit there and do nothing for a few hours unless you go out and do some exercise and sometimes it seems to take a second small correction to nudge it into action. So I often do a conservative correction and then stack a second small one on the top which I know is really naughty (stacking corrections) but that seems to work for me. As I said, it is hard to explain exactly what the difference is from NR but there are little quirks with it that take some figuring out how top work around them.
I intend to stick with it now but it is still not an ideal solution and whilst I have figured out how to make it work for me, I don't rate it as highly as my Levemir, which I would fight tooth and nail to keep, because it provides such great variable basal cover.

If you do eventually get to try the Fiasp, give it a fair, minimum 6 month, trial and be prepared to be a bit frustrated but hopefully you can find a better pre bolus timing with your NR, which will solve the breakfast spike problem. I am sure your DSN has had lots of feedback from people who tried Fiasp and couldn't get away with it, but she shouldn't stop you from trying it if you really want to. Just be aware it can be "tricky"!

 

[Zepherine]

@rebrascora Thanks, your advice is really helpful. I wish I had joined this forum years ago. It’s so helpful hearing other people’s experiences and makes the frustrations (boy aren’t there many!) somewhat bearable.

 

[Zepherine]

Inka, thanks for your comment too. Will try bolusing 5 mins earlier each day and see how it goes...

 

[njinglis]

Thanks @rebrascora @Inka @Thebearcametoo. Understand the concern that I should follow the advice of the diabetes team and I certainly will. They did initially say to us to bolus 15-20 mins before meals and we have probably always been closer to 15, so will inch it back to see if it makes a difference, but only within that range for now, so not out of keeping with what they have recommended, as understand the risks the other way also. Plus recognise there are a whole host of factors that affect blood sugars. Weather is an interesting one?

 

[helli]

I was interested in the change of insulin to Fiasp. I have been constantly bringing this up since I heard about it but at my last consultation the DSN said it wasn’t any good (not her exact words) so was a bit miffed as she didn’t explain her comment.

I changed to Fiasp a couple of years ago and find it good but i have to understand how it works for me.
I find the speed at which it works depends upon my blood sugar levels. If I bolus when my levels are in the 4s, it works instantly. However, if I inject when my levels are in double figures, it can take an hour to work.
Plus it’s shelf life outside the fridge is not as long as NovoRapid.

Now I have worked this out, Fiasp is much better than NovoRapid for me. But, before I knew this, I was cursing Fiasp.
I don’t think my DSN understands this behaviour and Novonordisk do not advertise it.
without this knowledge, I can see how DSNs can think it is not very good.

I have also read that it is not approved for some pumps which may put off some DSNs.
I used it in a pump and knowing the activation time parameters, I am able to use the extended/combo bolus to adjust the ratio of bolusing depending upon my levels. This would be difficult if injecting.

 

[TheClockworkDodo]

Thanks @rebrascora @Inka @Thebearcametoo. Understand the concern that I should follow the advice of the diabetes team and I certainly will. They did initially say to us to bolus 15-20 mins before meals and we have probably always been closer to 15, so will inch it back to see if it makes a difference, but only within that range for now, so not out of keeping with what they have recommended, as understand the risks the other way also. Plus recognise there are a whole host of factors that affect blood sugars. Weather is an interesting one?

Hi @njinglis and welcome to the forum 🙂

Yes, weather can have a huge effect on blood sugar - when I was using Lantus I found I needed twice as much basal in the summer as I did in the winter so I spent all autumn hypo-ing and all spring fighting off highs while I adjusted my doses (I'm on a different basal now and don't have as big a problem with that). Other people find it's the other way round - hot weather makes them hypo.

You mention a trip to the dentist - that is very likely to have contributed to the spike in your son's blood sugar as stress is one of the things which is most likely to raise blood sugar. Mine usually drops down pretty rapidly after the stressful situation is over though.

I bolus about half an hour before breakfast (and hardly at all before other meals) and usually this works for me, but sometimes my timing is a bit off and I hypo during breakfast, and sometimes I get that huge spike immediately after breakfast (the last week has been a nightmare of post-breakfast spikes for me, and I've no idea why, but I've raised my breakfast dose and my levels are just starting to come back down to normal now). As you say, there are a whole host of factors involved and I don't think any of us get it right every time, so try not to worry too much about the odd spike or hypo, especially in the early days, as there's an awful lot to learn (it does get easier!).

 

[everydayupsanddowns]

Welcome to the forum @njinglis (and @Zepherine !)

Glad to hear you have been finding it helpful to compare notes with others. Even if (as is likely) their approaches don’t exactly work in the same way, it can be interesting and stimulating to simply have a sounding board. Even if it’s “Well that wouldn’t work for me!”

I quite like this list from Diatribe of 42(!) factors which can affect blood glucose levels

42 Factors that affect BG

A useful list for when you're making that 'piece of cake' calculation :) ETA: Article about the table: https://diatribe.org/42factors

forum.diabetes.org.uk

This booklet of ‘100 things I wish I’d known about living with diabetes’ is an interesting and engaging read too

Diabetes UK - Know diabetes. Fight diabetes. | Diabetes UK

We are Diabetes UK, the leading charity for people living with diabetes in the UK. Our vision is a world where diabetes can do no harm.

www.diabetes.org.uk