TD1 and Hypos

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MSH33

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My 14 year old daughter was diagnosed with T1D 4 weeks ago. She is doing really well with it all but it is now hitting home how hard this will be to manage for her on a daily basis and I try not to worry about long term problems so at the moment, myself and husband are a bit down about it for her.

One of the things worrying me, is that if she takes a hypo through the night. The libra keeps losing its signal (I am assuming because she lies on it), initially she was so tired she was ignoring it. I find myself now constantly waking up in the night, checking if it’s connected and going in to wake her up to scan it.

I did this twice on Saturday morning and by the time I had gone back up she hadn’t scanned it and was on 3.4! It went off last night but her blood was above 6, I’m worried now about letting her have sleepovers.

She is in the list for a pump.

One of the nurses told us that she’d wake if she had a hypo and another telling us she only would if the body had enough glucose so I’m worried that I’m going to end up in a bad situation.

Can anyone share experience/tips? Also, if the alarm is incorrect how do you switch it off rather than treat the hypo during the night?

We have another hospital appt again in a few weeks but thought I’d ask on here.

Thank you!
 
Welcome @MSH33 🙂 It’s completely natural to worry about nighttime hypos. The good news is that your daughter has a Libre. Previously we all had to set alarms if we wanted to wake during the night to check our blood sugar!

If she lies on the Libre, she can get what’s called a compression low, where she’s not really low at all, it’s just the pressure on the Libre giving a false lows. That’s why it’s a good idea to fingerprick to check. Ideally, she’d train herself to try to avoid lying on the Libre arm, but it depends how active she is during sleep. What’s the Low alarm set at on her Libre? Do you have a Libre reader or are you using a phone?

What basal insulin is she taking? Has she been given a target blood sugar to go to bed on?
 
Hi and welcome

Sorry to hear about your daughter's diagnosis. It really is a huge shock and as well as being frightening, there is also a sort of grieving process for the loss of the carefree time before and it is important to acknowledge and accept that grieving process, so it is OK and perfectly normal to be sad and have a cry occasionally. I am Type 1 myself and I can't begin to imagine how horrendous it must be having a child who develops Type 1. I can feel what is going on in my body and I have read lots so I understand it well and of course I only have responsibility for looking after myself and I am "with me" all the time, so lots easier. However it was still very scary at first and the fear of nocturnal hypos is very debilitating. What helped me overcome that fear was actually experiencing them and learning how to deal with them and getting confident, but that unfortunately just comes with time and "experience". I had a week of them about 8 months after I was diagnosed. Prior to that I used to wake up through the night and test and it was simply the fear of them waking me up, not that I was acrually hypo. Then when I got back into exercise and started to have repeated nocturnal hypos I realized that my body would wake me up and it has done ever since and whilst I do my best to prevent them, I now sleep really soundly right through the night because I have gained that confidence.

Libre is a wonderful bit of kit but unfortunately it does have limitations and you do need to be aware of those. One of the most important ones is that if you lie on the sensor for any length of time it will cause what is known as a "compression low". The pressure of your body weight pushing on the sensor changes the chemical composition of the tissue under the sensor where the filament is sampling and that causes it to register a false low reading. Eventually I have learned not to sleep on the arm with the sensor and/or to place it where I am less likely to lie on it. You will usually see a sharp dip on the graph if it is a compression low and then levels will rise quite sharply when the pressure is removed, although it may take up to 30 mins for Libre to register this change, so it is important to double check any low alarms through the night with a finger prick before treating with glucose unless your daughter is noticeably hypo. I use a reader rather than the app and it goes in the bed with me when I go to sleep (usually in a PJ pocket or under my pillow and have no problems with loss of signal. I did use the phone app for a few weeks when the system upgraded to real time CGM and I found that the connection dropped out a couple of times overnight when it was on the bedside table but not when it was in bed with me. I have te loss of signal alarm switched off because it drains the battery and I don't find it helpful and the low and high alarms seem to have a better range than the loss of signal suggests. Ultimately I decided to go back to the reader which you have to scan to get readings because that suits me better and is reliable for me and smaller to carry and I am not joined at the hip with my phone like some people.

I think it is important to remember that people survived and thrived in many cases without all this modern technology. We are incredibly lucky to live in an age when this technology is widely available and gives us a massive advantage over previous generations, so your daughter is far safer today than children were even 20 years ago let alone 40 or 50 years and we have members here who have lived their childhoods and grown into healthy adults without developing significant issues, so there is every reason to believe that your daughter will manage even better. The body has checks and balances and provided that you take sensible precautions like not going to bed with active bolus insulin on board and not increasing basal doses by large amounts, the liver can and does throw out glucose to recover these situations if we fail to treat them ourselves. The main occasion when this would be likely to fail is when alcohol has been consumed as the liver gets so busy removing the alcohol which is effectively a toxin, that it can fail to deal with a hypo, so we do have to be extra careful about consuming alcohol, but presumably that isn't a problem for your daughter at the moment. Not that we can't drink alcohol, but we just have to give it a bit more thought and take precautions.

Hopefully that will put your mind at rest a little, but really just wanted to say that your feelings and fears are perfectly normal and I am sure we can all relate to them, but the human body is pretty resourceful and resilient and out modern technology is brilliant (albeit not perfect) so you have every reason to be optimistic for your daughter's future. It will just take a bit more thought and planning to achieve things and keep herself safe but perfectly doable.
 
Welcome to the forum @MSH33 . I am very pleased that you have found us.

Your worries are perfectly normal, and all that we do will take time to get used to for you, your partner and your daughter. As she becomes more confident about dealing with her management she will be able to do all that she used to. It may just take a bit more planning. Sleepovers may be a bit much initially but once things settle that will also become easier.

You have already been told a lot of useful information by @Inka and @rebrascora, especially about the Libre. As you process all that is going on keep coming back with questions, no one will mind, and nothing is considered a silly question on here.

If you are happy to do so, telling us which insulins your daughter is using will help us in our responses.
I look forward to hearing more from you.
 
MSH33 said:
My 14 year old daughter was diagnosed with T1D 4 weeks ago. She is doing really well with it all but it is now hitting home how hard this will be to manage for her on a daily basis and I try not to worry about long term problems so at the moment, myself and husband are a bit down about it for her.

One of the things worrying me, is that if she takes a hypo through the night. The libra keeps losing its signal (I am assuming because she lies on it), initially she was so tired she was ignoring it. I find myself now constantly waking up in the night, checking if it’s connected and going in to wake her up to scan it.

I did this twice on Saturday morning and by the time I had gone back up she hadn’t scanned it and was on 3.4! It went off last night but her blood was above 6, I’m worried now about letting her have sleepovers.

She is in the list for a pump.

One of the nurses told us that she’d wake if she had a hypo and another telling us she only would if the body had enough glucose so I’m worried that I’m going to end up in a bad situation.

Can anyone share experience/tips? Also, if the alarm is incorrect how do you switch it off rather than treat the hypo during the night?

We have another hospital appt again in a few weeks but thought I’d ask on here.

Thank you!
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Hello, do you have the most recent Libre link app on your child’s phone? Using it as a “CGM.”
There is another “sister app” called LibreLinkUp you can install on your device, following your daughter’s BG.
You would get disconnection (or “no recent data.”) on your app if the signal from the sensor to your child’s phone is lost? As well as receiving the low alerts too.

Could be a way of monitoring those “sleepovers?” Ring the child & prompt to scan if she becomes disconnected.? Check if you see a low?
I use the app on my tablet. I do have alarms set on my phone nearby. But I also get silent banner pop ups when using the other device.
 
Thank you for your kind words, my friend that i used to work with has TD1, i would always see her injecting at her desk prior to breakfast and lunch, folk on my family have type 2 but I have been pretty ignorant to it all (apologies) and didn’t realise the effort involved because they managed it so well!

I agree, the tech is phenomenal and the libre is a great bit of kit.

I do worry when she’s older drinking alcohol, it’s not something i want to encourage but don’t want her to feel she is different either when out with friends (that’s another worry) . She is nearly 15 (one of the younger ones in her year) and is in a very small minority that doesn’t drink! She has two boys in her year who are T1D and they drink a lot!

So she has reduced night time to 14 on her Triseba/degladec (sorry for spelling).

Sorry but what do you mean going to bed with active insulin or increased basal doses (this is all new to me )

So we i increased her my life app by 2 pre g for breakfast and supper and reduced the night insulin as per instructions from 16 to 14, seems to be better so I guess she should try not to lie on the libre. If the libre is wrong during the night, is there a way to reset it?

Agree it is all knowledge and experience.

X
 
MSH33 said:
Sorry but what do you mean going to bed with active insulin or increased basal doses (this is all new to me )
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This means having her evening meal well before bedtime so that her bolus (meal time) insulin is fully spent before she goes to sleep..... usually 4-5 hours is the activity time. So that you know that insulin is not going to drop her levels at all whilst she is asleep and the only active insulin in her system is the slow release Tresiba (basal) insulin.

At the moment I imagine her team will be advising you on adjusting her Tresiba doses but once you get to the stage of being confident to recognize when they need adjusting, it is important to do so very cautiously, particularly with increases as obviously that brings a risk of nocturnal hypos. Generally no more than a 10% increase and then give it several days to see how that works, before adjusting again if need be.
MSH33 said:
o I guess she should try not to lie on the libre. If the libre is wrong during the night, is there a way to reset it?
Click to expand...

As an adult it is easier to "program" yourself not to lie on the Libre than it probably is as a child, but sometimes just placing the sensor slightly further round to the back of the arm can help reduce "compression lows".

The Libre will bounce back to normal itself once the pressure is released but it will probably take about 30 mins to show this return to normal. This is why it is important to always check hypo recovery 15 mins after treatment with a finger prick and not Libre. Because Libre takes longer to show the recovery in glucose levels because it measures the glucose in interstitial fluid and that lags behind blood glucose.
 
rebrascora said:
As an adult it is easier to "program" yourself not to lie on the Libre than it probably is as a child, but sometimes just placing the sensor slightly further round to the back of the arm can help reduce "compression lows".
Click to expand...
I never changed my sleeping position for the Libre.
I definitely changed the Libre position for my sleeping. It is another example of how I consider it important for Type 1 to mould to my life and not the other way around. OK, I am stubborn but it is important that diabetes does not stop me doing what I want .. including sleeping on my arm.

I put my sensor very high on my arm and as far back as I can reach to apply it myself. This is close to my shoulder ... kind of in line with my arm pit.

The added advantage (which may be important for a 14 year old) is that it is rarely on display unless I am wearing a strappy vest top.
 
So what I meant was if the libre alarm goes off through the night and it’s false, is there any way to reset/switch off as it keeps sounding all alarms on our phones until she treats it (even though I’d blood is fine) as it keeps dropping.

Best hypo treatments friendly to teeth? I am also worried about her getting fillings with cola, lucozade and the sweets.

She goes to bed about 1030 and eats anything between 5-630. However, realise she eats hungrier she gets, Being s teenager she is always hungry so she sometimes takes another small dose for somerhing like porridge, should she try and avoid this? Tonight eas just after 8pm as she has dinner at 5pm.

Also final question, I’ve noticed when I make her pasta or tonight stir fry she has hypos, we have been told to try giving the insulin after dinner - any advice on this please or is she taking too much insulin?

Thank you!
 
MSH33 said:
So what I meant was if the libre alarm goes off through the night and it’s false, is there any way to reset/switch off as it keeps sounding all alarms on our phones until she treats it (even though I’d blood is fine) as it keeps dropping.
Click to expand...
All the alarms are optional so you should be able to turn them off. Obviously that means the alarm won't fire, so you want to be confident turning it off is the best thing to do (and presumably remember to turn it back on in the morning).
 
The alarm should stop sounding once she stops lying on the sensor and it recovers.... usually this is about half an hour, but obviously, if she lies on it again it will go off again. This is why some adjustment to the placement may be helpful with her next sensor. It is a question of trial and improvement.... as with everything diabetes!

If anyone has ideas for tooth friendly hypo treatments I am all ears. Unfortunately, we need glucose to treat hypos and our mouth is the fasted area of our body to absorb it, so the best I have come up with is to thoroughly swill my mouth with water kept by the bed, once my hypo treatment has worked.

Pasta and pizza and fish and chips (basically fatty foods) release their glucose more slowly so the insulin sometimes gets to work faster than the digestive system breaks down the carbs and can cause a hypo if you bolus all the insulin for it up front. As adults we recommend what is called a "split dose" where we inject some of the insulin before the meal and the rest an hour or so afterwards. With a child I think perhaps an extra injection may be more of an issue for them, so yes certainly try injecting after the meal and see how you get on with that or see how she feels about splitting the dose to balance it better. At 14 I am sure she knows her own mind (hardly a child anymore), so I am sure she will have thoughts about what she feels is best for her. Personally I didn't like the feeling of levels going high and then coming crashing back down into range later (it used to happen to me every morning after breakfast) but your daughter may not feel it or be bothered by it. We are all different.

There is no correct way to deal with these situations, just what suits you and your lifestyle and your food and your body and the insulin you use, so you have to conduct a few experiments to find what works best for you, for that particular meal. It seems so complicated having different strategies for different meals but gradually it just becomes second nature.
 
Regarding tooth friendly hypo treatment, treating the hypo is far more important. If you are concerned, I have read that it is better to swill water than cleaning teeth.
I would mention that I have been treating hypos for 20 years and needed no fillings or any dental treatment in that time.
 
MSH33 said:
So what I meant was if the libre alarm goes off through the night and it’s false, is there any way to reset/switch off as it keeps sounding all alarms on our phones until she treats it (even though I’d blood is fine) as it keeps dropping.

Best hypo treatments friendly to teeth? I am also worried about her getting fillings with cola, lucozade and the sweets.

She goes to bed about 1030 and eats anything between 5-630. However, realise she eats hungrier she gets, Being s teenager she is always hungry so she sometimes takes another small dose for somerhing like porridge, should she try and avoid this? Tonight eas just after 8pm as she has dinner at 5pm.

Also final question, I’ve noticed when I make her pasta or tonight stir fry she has hypos, we have been told to try giving the insulin after dinner - any advice on this please or is she taking too much insulin?

Thank you!
Click to expand...
I use a 3rd party app in conjunction with librelink. I can “snooze” the alarm on that. (Librelink is disabled on alarms.) After checking & treating or just a corrective fast acting carb?
Some Stir frys I do reasonably well. Pasta. Even if I’m accurate with the dose, I have to treat lows till it’s digested with the bolus I use. It’s like pizza, in some respect. After the hypo treatment then the pasta kicking in. It never seems to end well. (Higher than wished.)
What fast acting insulin does your daughter use?
 
@MSH33 For pasta, many people find they have to split the bolus - some before the meal, the rest 1hr or 1.5hr or 2hrs after, depending on what works for your daughter. On a pump, I have 1/3 of my dose up front before the meal and the other two thirds spread over the next 1.5 hours. It’s just a question of experimentation to find what works. It might be a 50/50 split or it might be a third/two thirds or whatever. While you experimenting to get it right, it’s easier to stick to the same amount of pasta and the same kind of sauce to remove one variable.

Noodles and rice can need split boluses too. I presume she’s having one of those with her stir fry.
 
Who has actually witnessed these two lads 'drinking a lot' who you trust implicitly yourselves? I am now a great grandma of 4. I wasn't diagnosed T1 till I was 22 BUT by then I absolutely knew for a fact that you couldn't always trust what some boys told you! (nor even some adult ones either as it turned out)
 
trophywench said:
Who has actually witnessed these two lads 'drinking a lot' who you trust implicitly yourselves? I am now a great grandma of 4. I wasn't diagnosed T1 till I was 22 BUT by then I absolutely knew for a fact that you couldn't always trust what some boys told you! (nor even some adult ones either as it turned out)
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I hope you'll trust that I did indeed drink quite a lot (like everyone else I knew at uni back in the late 90s) all while being T1.

MSH33 said:
I do worry when she’s older drinking alcohol, it’s not something i want to encourage but don’t want her to feel she is different either when out with friends (that’s another worry) . She is nearly 15 (one of the younger ones in her year) and is in a very small minority that doesn’t drink! She has two boys in her year who are T1D and they drink a lot!
Click to expand...

Drinking (a lot) is fine, you quickly get used to needing to eat when you get home (even if you don't remember getting home) and adjusting (drastically reducing) your doses before going out, etc. Also helpful is eating something to line the stomach before going out, which had the additional benefit of not only reducing the onset of drunkenness, but also providing a fairly long source of carbs.

I never used to take anything sweet with me, which was a mistake I realise, I would say to my 18 yo self (or indeed my 15 yo self) to take a pack of two of skittles in my pocket (taking a jacket was a faff, so unless it was absolutely freezing I'd not bother - cloakrooms cost money required queuing and who knows whether things in your pockets would come back, assuming you even remembered to pick up your jacket...).

Had I had a CGM, it would have been much easier to make a decision to get a full-fat coke or similar before leaving a club. I'd never normally take my BG meter out if I were going drinking, even if eating out beforehand, as I would always tend to run low so wasn't too concerned about exact dosing for food (with Mixtard 50), I would test before I went out and go by feel.

Walking home while low is something I was quite familiar with but was never particularly fun in hindsight - it does focus the otherwise alcohol-adled mind though.

I'd be more worried about the other effects of drinking (like the not remembering bit and the not being able to walk straight bit)
 
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