We are up every 2 hours and struggling with a deep sleeping type 1 son

[Michael Moffart]

Our son is 23 and has the Dexcom G6 glucose monitor linked to our phones. He doesn't hear the phone alarm at night and is such a deep sleeper. At night his sugars have gone down to 2.8 and we have to intervene. More recently they are alarming at night as his upper alarm is set to 15 and his insulin levels need adjusting along with his carb ratios. The local authority has been really poor at supporting us and we are in the process of moving to a new authority. We have had him to sleep cliinics, have spoken to various consultants and we are still in a situation where my wife gets up with him and corrects sugars, being an unpaid carer, while I go to work. Life is hard. We have tried all sorts of loud alarms and he is still not independent. I thought about trying hypnosis but he is not willing to try it. Any ideas would be appreciated or if anyone has had a similar niche problem like this I would be interested to hear. Please do not be patronising and say we should leave him be as I am not prepared to find him in a coma with blood sugars below 2 by doing this. Do you think we should put the upper alarm up to 20 perhaps to get more sleep?

 

[Jimmy2202]

Well I’d say you need to ask yourself why did his sugars drop that low during the night?
I’ve learnt that should this happen you first would need to do a Basel test to make sure his background insulin is correct.
Does he eat late to have these highs during the night?
I have been getting some highs during the night but I know it’s down to eating to late (my one year old boy has something to do with this) 🙂

 

[everydayupsanddowns]

Welcome to the forum @Michael Moffart

Sorry to hear about the difficult time your son is having, and how challenging you are finding it to support him. He is very lucky to have you, and I am sure he appreciates what you are doing for him very much.

Do you know the names of the insulins he uses? And does he use injection pens or an insulin pump?

Has he reduced his night time insulin following these low levels? Insulin needs can vary through the year, and the onset of more spring-like weather has certainly meant I have needed to reduce my insulin doses.

Overnight hypos used to be accompanied by crushing tiredness and a really blurry fuzzy-headed discombobulation when I experienced them (before the help of forums helped me sort them out), so his inability to wake and self-treat may be physiological. But he should not be having them repeatedly - be encouraged that this is something that can usually be resolved.

He shouldn’t be having 15s either - and setting the CGM to alarm at 20 isn’t what I would do myself. I would want to work out what was causing the BG wobbles and try to reduce them.

Has your son ever been offered a place on a structured education course, or a refresher if he did one years ago? There are a number throughout the country with different names - DAFNE and BERTIE are two well known ones. There is good evidence to shpw that these can be really effective in improving the lived experience of people with T1, and reducing hypos, along with giving skills and strategies for balancing the complexity of factors such as insulin, carbohydrates, alcohol, work, stress, exercise and illness.

Hopefully by picking the brains of the forum you can offer him some new ideas to try?

If a course seems too much to take on, perhaps a book like ‘Think like a pancreas’ would work well. Lots of practical and applicable techniques to experiment with.

 

[DaveB]

I agree that you need to pay some attention to what insulins he is using. Then try to balance the Basal which is best split day/night for most Basals so you can set different injection levels for each as I do. Does your son know how to balance the Basal and does he split it? None of this is easy but try to focus on avoiding the bad levels if you can. I do have control problems and keep my average level higher than I would like to avoid going low. Going high for a short time is not dangerous

 

[rebrascora]

Mike beat me to most of the suggestions I was going to make.

How long has he been diagnosed and how proactive is he in managing his diabetes? Just wondering if he has been used to you and your wife managing it for him if he was diagnosed as a child and perhaps doesn't want to engage with it and take on the responsibility himself. I appreciate you say he is a deep sleeper and I am not suggesting that he deliberately sleeps through the alarms but many of us were really anxious about nocturnal hypos after we were diagnosed as adults and worried that we might not wake up. I doubt I am the only one who used to wake up through the night and test.... particularly once I got Libre, scanning 3-4 times a night to feel safer initially and then drop straight back off to sleep again, just because that anxiety was in my mind when I got into bed. I am not saying that is a good situation either but I wonder if your son is just a little too comfortable with having you and your wife there as a security blanket and that is enabling him to sleep so soundly when in reality a little bit of concern for his own welfare is probably healthy.

Does your son realize that holding a driving license is at risk in his circumstances. He is effectively needing assistance to deal with hypos on a regular basis which I believe would be a problem with DVLA. Just wondering if that might incentivize him to seek better control and perhaps have a more healthy respect and awareness of hypos. I am not saying that he deliberately ignores the alarms but I believe that you can train yourself to be aware whilst you sleep.... not necessarily aware of hypos but aware that you need to wake up when the alarm goes off. It is a sort of subconscious trigger. In the same way that you learn where the edge of the bed is and don't roll out.

As regards making the alarm louder I have read suggestions of people putting their phone in a large drinking glass or metal container by the bedside and having it on vibrate to help amplify alarms, which might be worth a try.

I hope this post doesn't come across as blaming your son as that isn't the case, but just a question of making him think about being more proactive with his diabetes management and taking more ownership and responsibility perhaps. Diabetes can have very subtle effects on your mental outlook and you have to be quite self aware to assess these and also the impact your diabetes has on the people around you. Learning to manage it better is key to not putting a strain on others and better education is a big part of that. DAFNE, BERTIE, self education through books and this forum are all really helpful with prevention but also better self awareness.