How to support teen with fear of lows

[Nap2]

Hi, my daughter is 14 and been type 1 for 2.5 years. She has excellent control of her levels but has the usual spikes and lows. But last November she had a bad low where she went to 1.8 but we couldn’t get it back up for over an hour. She felt awful and had to keep having lift shots (around 5) to get back up. This was due to insulin stacking. But since then she really panics if she goes low, or even drops a little too fast but isn’t low. I have tried to reassure her that we know the reason for that bad experience and that it can’t happen if we dose correctly. She has had another bad low since (around 2.4) but again due to not counting carbs.
How can I help her feel more confident again? I have spoken to the diabetes team but they do not have a therapist at the moment.
I can see that this is a fear that type 1s can have and I totally understand it but I don’t want it to affect her life more than it needs to.
Any tips would be great

 

[Jaylee]

Hi,

All I can say is when I was a kid the hypos were nightmarish whilst I was enduring them?
I talked myself into the mindset of as long as I have hypo treatment & I’m eating or drinking it. It will soon be over..

But then I applied the same to nightmares, too. I can always wake up.

In my experience of dealing with family with either dementia or altzhiemers. The cognative decline whilst realy hypo is not disimilar.

 

[Juicyj]

Sorry to hear about her experiences, it's safe to say that it's common amongst us, I can only describe my worst hypos as near death experiences so it's absolutely understandable how her fear has manifested itself.

How does she manage her t1d, insulin delivery and what sensor ? How are her injection/set sites ? Does she have lumps in these areas ? Has her team given her any guidance in regards to managing her insulin ?

As they go hand in hand with t1d, they are unavoidable unfortunately - however with that being said, I now manage my t1d using the Tandem Slim and Dexcom G7, the system is a hybrid closed loop and it has helped me avoid low hypos as the pump will stop insulin delivery if it detects I am falling, this means that in the last 3.5 years of using this system that i've not had a frightening low low. I will get a low from exercise but am also fairly intuitive to detecting when levels are falling quickly and can prevent a hypo if I act fast with glucotabs or jelly babies (both quick acting and always on me). I also use Hilltop Honey now which has been brilliant for bringing me up quickly during exercise. Does she have good hypo awareness ? Be good to learn more about how she manages and see if tweaks or changes could improve her circumstances and build her confidence back up.

 

[NeoToad]

I don’t have diabetes myself, but my niece was diagnosed as a teen, and I’ve seen how scary those lows can be for her and the whole family. What really helped was open, calm conversations and letting her feel in control — not pressured. Just being there, staying patient, and learning together made a big difference. You're doing great by reaching out and showing you care.

 

[Nap2]

Sorry to hear about her experiences, it's safe to say that it's common amongst us, I can only describe my worst hypos as near death experiences so it's absolutely understandable how her fear has manifested itself.

How does she manage her t1d, insulin delivery and what sensor ? How are her injection/set sites ? Does she have lumps in these areas ? Has her team given her any guidance in regards to managing her insulin ?

As they go hand in hand with t1d, they are unavoidable unfortunately - however with that being said, I now manage my t1d using the Tandem Slim and Dexcom G7, the system is a hybrid closed loop and it has helped me avoid low hypos as the pump will stop insulin delivery if it detects I am falling, this means that in the last 3.5 years of using this system that i've not had a frightening low low. I will get a low from exercise but am also fairly intuitive to detecting when levels are falling quickly and can prevent a hypo if I act fast with glucotabs or jelly babies (both quick acting and always on me). I also use Hilltop Honey now which has been brilliant for bringing me up quickly during exercise. Does she have good hypo awareness ? Be good to learn more about how she manages and see if tweaks or changes could improve her circumstances and build her confidence back up.

I can only imagine how horrible it must be to have a very serious low.
She’s using MDI and Dexcom g6. She’s in range 89% over the past 90 days and has excellent control. But the two extreme lows have really affected her confidence.
We have got her on the list for a Medtronic closed loop system as heard they help and shut off insulin when it detects levels are trending down.
It’s really reassuring to hear you haven’t had a bad low for some time in a similar system. So think that sounds like the way to go.
We use lift shots if going low which seem to work fast, and she can feel the lows. But she’s started to really panic. She never used to and want to reassure her.

 

[SimonP78]

I am also sorry to hear about her experiences, but she should know she's not alone, it's the main fear for T1 diabetics imo.

You say the first one was due to stacking, how does she monitor IoB? I try to avoid stacking too much insulin, certainly not more than I can (slightly un)comfortably eat my way out of if it all decides to start acting at the same time.

It's not a nice feeling seeing a sudden drop with lots of IoB, and even less so on those occasions when you simply can't get it to come up again for hours and have no idea why - I vividly remember one about 25 years ago when on placement and I was concerned I'd run out of things to eat it took so long to come back up (see comment below about being away from home base!).

With the bad low at 2.4 mmol/l how did she feel, is your description of bad to do with the number or how she felt? In quite a few years of being diabetic (39), I've spent quite a lot of time going hypo (basically all the time at school and uni) - typically the hypos themselves are ok, you can deal with them (even if you don't remember having dealt with them), it's the concern of that you don't have enough supplies (or appetite) that I always find and found to be the problem. Of course we're all different, so my experience may be different to that of others.

A range of hypo treatments can be a good thing - sometimes you don't fancy whatever the usual thing is (and then in the back of your mind are worried you might not be able to eat enough to treat one) - I'm much less concerned when I'm at home and know I have a range of things I could eat (and importantly where they are and how much is available), it's much more worrying if you're somewhere unknown or at least not as well stocked: my overnight bag contains a range of hypo treatment options, my desk at work is similar stuffed with a range of options, and when out riding I take a variety of treatments. Interestingly being out for a meal, etc., isn't a massive concern as I have always tended to run low when out so don't take very much insulin for meals, so don't have a concern/fear of needing to correct large amounts of insulin.

 

[EllieM]

I second @SimonP78 's suggestion of multiple hypo treatment options for confidence. Also, when I have a bad low (below 3) I find that my dexcom lags significantly so using a glucometer can give you confidence that yes, your levels are going up (or at least not going down), when your cgm is still showing a scary downwards trend. My dexcom also tends to read slightly low during a severe hypo so having my glucometer to hand is really reassuring for me.

You can get glucagon injections so that family members can inject glucose if the diabetic is too low to help themselves. Would these help?

I have had some bad hospital inducing hypos, which is why I am now on a pump, and the pump both shows insulin stacked and will stop insulin if it thinks I'm going too low. The only (slightly) scary hypo I've had since then has been when I misjudged carbs and had too much alcohol....

For me, it's really important to know that I always have enough carbs with me, so extra glucose when going out is a mental life saver, even if it's not truly necessary.

Remember that your liver will cut in and pump out glucagon if you go low, so while hypo treatment is an essential you do get some help from your body.

I feel for you and your daughter. How I hate hypos. But modern technology can really reduce their number and severity. (I love my cgm and my pump.)

Good luck.

(edited for clarity)

 

[Hopeful34]

I have tried to reassure her that we know the reason for that bad experience and that it can’t happen if we dose correctly

I know this won't be what you want to hear, but unfortunately it can happen even if you dose correctly because there are 42 different things that affect blood sugar, not just food. @Antje77 do you still have the list that you previously posted?

When it's warm, I need less insulin for example, and hormones used to create havoc when I was younger with how much insulin I needed, as it constantly changed. Usually vaccinations raise my blood sugar, but I've had a couple where within 5 minutes my levels dropped liked a stone initially and after a day or so rose as normal.

Do you have a glucagon injection kit at home?

You could maybe discuss with her diabetes team slightly raising her lower target level for a while, or 'easing up' on time in range targets, so there's less risk of a severe low, to help her regain her confidence.

 

[Antje77]

there are 42 different things that affect blood sugar, not just food. @Antje77 do you still have the list that you previously posted?

I do, but I'm away for the weekend and illegally sleeping in my car at a very pretty place, and I can't muster the courage to try to share that picture on my phone.
You can do so yourself though, google will lead you to the picture!

 

[Hopeful34]

 

[Hopeful34]

This one maybe

I've posted it above @EllieM as my phone wouldn't let me open your suggestion.

 

[Nap2]

Wow, thank you for all your replies. It is reassuring to hear how you all handle the risk of lows.
She used to not worry at all about lows before, which stressed us out. I’m glad she is now aware they aren’t good but don’t want her to be frightened.
When she has a ‘normal’ low she feels it but we treat it and she’s fine. A ‘bad’ low is when she’s had a couple of times dropping fast, she’s felt it but can’t explain how she feels and she has then panicked which has made the situation more stressful. She’s only had a couple of these but feel they’ve made her now more worried if she goes even slightly low.
But thinking what you have all mentioned is having more hypo treatments. We have these at home, they’re everywhere! But I’ll put together a hypo kit for when she’s out of the house. At the moment we just put in lift shots loose in her bag. But maybe having something dedicated for hypos will make her feel safer.
I do have the glucagon injections and I wanted to use it during both bad lows but she wouldn’t let me. Later she said it meant that she was scared she was in danger.
We don’t do much regarding IoB. We’ve been looking at it if she’s going to exercise but wondering how do you all monitor that?

 

[Nap2]

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Thank you