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Type 1 son will not wake up

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duggiedamson

Member
My 16 year old is now on the new Medtronic pump which emits an alarm when he is low or high. Unfortunately, despite it cutting off the background insulin when he is low he can still drop to dangerous levels at night. As he is a very deep sleeper he never wakes up when high/low and my wife has got up with him for over 10 years now. She is shattered and so am I. She has to check his blood 3 times per night. We tried a baby monitor recently but it didnt pick up the alarm signal so we still cant hear the alarm in our room. I dont know if there is any way he will get back his independence and be able to live away. Has anyone any ideas?
 
I'd contact the CGM maker and ask is there a way for the CGM alarm to activate another louder alarm..other than that I have nothing
 
jack412 said:
I'd contact the CGM maker and ask is there a way for the CGM alarm to activate another louder alarm..other than that I have nothing
Click to expand...
He has a CGM. Alarm is set to full loudness. Son is 16. He is the only kid under 18 on this latest pump in the UK so we are at the cutting edge. But it is the not waking up that is causing our problems.
 
No idea if this will work, but there is a pedometer called a fitbit.
It is worn on the wrist like a watch.
You can programme in an alarm, as often as you like, repeating every day.
It goes off with a weird little buzzing vibration on the wrist that I find a much better wakeup than a noise.

I use it because my partner works shifts, and I don't want to wake him with a bleating noise.

Hope that helps.
 
I've got to say this sounds crazy. Why are you testing his blood sugar three times a night? You may need to do that sporadically to get the overnight bolus sorted out but this sounds obsessive.

If I were your son I wouldn't wake up either if I've had ten years of interrupted sleep!

I think you and your wife need to exhale and calm down a bit. This forum is full of Type 1's who sleep through the night without issue.

As a teenager your son will have some random blood sugars due to hormonal changes, but they won't be insane; you will be able to understand them in the context of food, basal and bolus.

I once heard someone say that you could explain all economics in 4 words everything in addition to those was padding. The words were 'people respond to incentives'. If you and your wife don't allow your boy to take care of his own condition then he won't. It doesn't matter what his blood sugars are because mum will be checking anyway...

You've got to stop the nighttime tests and use the information you have to tweak the pump levels so he doesn't go hypo.

Buy a Freestyle Libre and use for a few weeks to assure yourselves nothing bad is going on over night and then take your foot off the gas; or you are going to burn everybody out.

Best

Dillinger
 
duggiedamson said:
He has a CGM. Alarm is set to full loudness. Son is 16. He is the only kid under 18 on this latest pump in the UK so we are at the cutting edge. But it is the not waking up that is causing our problems.
Click to expand...
I have trouble getting across what I mean sometimes..I understood that the CGM wasn't waking him...I meant that the cgm unit can trigger another remote alarm, much louder that could wake your son
 
duggiedamson said:
My 16 year old is now on the new Medtronic pump which emits an alarm when he is low or high. Unfortunately, despite it cutting off the background insulin when he is low he can still drop to dangerous levels at night. As he is a very deep sleeper he never wakes up when high/low and my wife has got up with him for over 10 years now. She is shattered and so am I. She has to check his blood 3 times per night. We tried a baby monitor recently but it didnt pick up the alarm signal so we still cant hear the alarm in our room. I dont know if there is any way he will get back his independence and be able to live away. Has anyone any ideas?
Click to expand...


Shouldn't need to test so frequent, if your lad is experiencing erratic bg levels throughout the night then you need to review his basal rates with his diabetes team.
 
Where exactly does he have his pump when asleep?
It also sounds to me as if he is hypo unaware so perhaps consider a different insulin and or setting his target higher so anything at 5mmol is treated.
 
The idea of a cgm is to sit down the next day and review the results...
There may be differences between say weekends a d weekdays or days with sport...
You really need to be able to have different profiles uf necessary and to sit down prior to 6pm each night to adjust basals.
 
If you are testing when you have a cgm at nights? Are the cgm readings matching the blood tests...
The only way to resce erractic readings is to have the confidence to alther basal rates for nights...
 
I use a Medtronic pump and CGM as I have no hypo awareness and some nights I am only aware I've been hypo when I check the alarm history in the morning and my pump has suspended insulin for 2 hours. To try to stop this happening I've recently set my Hypo warning and Low Suspend alarms to a higher glucose level to avoid my bg falling too low. Is your son actually losing consciousness or just sleeping through the alarms?

Can you set a higher glucose limit to predict hypos and a higher limit for Low Suspend to stop his levels falling too low.? If you are using the new 640g pump with SmartGuard that is designed as a further safety net to turn off basal delivery well before the hypo threshold is reached. With correct basal rates and CGM it should combine to protect your son from disabling hypos whether he wakes from the alarms or not. Obviously it is not good to have regular Low Suspends through the night and sleep through them, it would suggest that the current basal rates do need looking at with the data collected from the CGM.

Have you tried setting the pump alarm to vibrate instead of bleeps through the night in the hope that will alert him more readily? I would contact your diabetes team for more help with getting the best protection from the CGM /pump and for advice on his basal rates.
 
Hi

Sometime ago someone on the forum mentioned an app called Sentector which picks up the sound from someone or some device and by bluetoot, transmits the sound to another bluetooth device like a mobile phone etc so could work to alert someone else that something was wrong
 
Last edited by a moderator:
So here I am again. Still having problems. Blood sugars show no steady pattern and are affected heavily by emotions of my son. We have set the pump to cut off Insulin at a higher level but given it can be 4 digits inaccurate (these pumps need calibration twice daily) then it could cut off when it thinks he is 7 (but he is actually 3 say) then after cutting off his sugar can still fall into hypo with serious consequences. Hence my wife is still setting her alarm 2 or 3 times a night to get a true reading of his sugars and has no life being totally shattered. I am really worried as my son has no independence. Any further help would be welcome.
 
duggiedamson said:
So here I am again. Still having problems. Blood sugars show no steady pattern and are affected heavily by emotions of my son. We have set the pump to cut off Insulin at a higher level but given it can be 4 digits inaccurate (these pumps need calibration twice daily) then it could cut off when it thinks he is 7 (but he is actually 3 say) then after cutting off his sugar can still fall into hypo with serious consequences. Hence my wife is still setting her alarm 2 or 3 times a night to get a true reading of his sugars and has no life being totally shattered. I am really worried as my son has no independence. Any further help would be welcome.
Click to expand...

Hi,
If you wish to start encouraging your lad's independence whilst saving your wife's sanity. Get your son to sign up here....! ;)
 
He's not waking up because it sounds like he never gets to sleep properly. If he is going hypo nightly a team need to get involved and cut his basal rate until that stops. Diabetics should not need to test overnight unless something changes with their basals and they do maybe a week or so to check it. A teen, especially, needs more and deeper sleep. Talk to his team and work from there. If you are that worried about hypos and not hearing the alarm and the team's changes don't impact then there are always alert dogs.
 
duggiedamson said:
So here I am again. Still having problems. Blood sugars show no steady pattern and are affected heavily by emotions of my son. We have set the pump to cut off Insulin at a higher level but given it can be 4 digits inaccurate (these pumps need calibration twice daily) then it could cut off when it thinks he is 7 (but he is actually 3 say) then after cutting off his sugar can still fall into hypo with serious consequences. Hence my wife is still setting her alarm 2 or 3 times a night to get a true reading of his sugars and has no life being totally shattered. I am really worried as my son has no independence. Any further help would be welcome.
Click to expand...

Never saw this post. I'd go to the Dr and demand a new pump.I have never heard of anyone else on that pump needing to do that but many others can talk on that issue. Sounds like the pump has a serious fault. My animas vibe never gets recalibrated other than when it gets a new battery in it and that happens once in a blue moon indeed.
 
duggiedamson said:
So here I am again. Still having problems. Blood sugars show no steady pattern and are affected heavily by emotions of my son. We have set the pump to cut off Insulin at a higher level but given it can be 4 digits inaccurate (these pumps need calibration twice daily) then it could cut off when it thinks he is 7 (but he is actually 3 say) then after cutting off his sugar can still fall into hypo with serious consequences. Hence my wife is still setting her alarm 2 or 3 times a night to get a true reading of his sugars and has no life being totally shattered. I am really worried as my son has no independence. Any further help would be welcome.
Click to expand...
It sounds to me as if you need to review all pump settings I find it odd that a sensor is 4 digits out so something isn't right somewhere.
 
I would say to raise the target levels....

If hypo's are regularly occuring then the basals are hugely wrong!!

You need to start at basics.

Check cgm is inserted correctly and accurately tested to blood test.

I wonder though if your son is like me when I had a cgm. It was totally wrong at night.. Consistently alarming saying I was low.. And I wasn't on blod tests. This was due to my body, my sleep modes, my duvets etc... A cgm was totally useless for me at night.

You need to raise bloods so that they run higher. No hypo's. For me I would be lowering the basal rate initially to allow bloods to get higher and a decent nights sleep for all!!!
Once raised give it a week of good sleeps without getting up to rest etc.. Even 2-3 weeks. Then restart the cgm.

You all need a break. I personally feel that your son is similar to how I was at nights with CGM.... Totally false readings..
 
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