Parents or T1D children- does it ever get easier?

[Seriouslymole]

We are nearly a year into diagnosis and I still find everything a massive strain. DS is 13 and generally pretty amazing at looking after himself. But for example, tonight - he’s been in range most of the day and now for some inexplicable reason, after a low-carb tea with correct bolus he is just climbing - currently 15.6 arrow up despite a correction and a tbr. My stomach is in knots and I feel massively anxious and don’t know what to do. I hate the whole thing.

Do you ever learn to relax and think - oh well, shit day but tomorrow’s another day? I worry constantly about the short and long- term damage we are doing every time we’re screwing Up like this.

I completely understand. We are just over a year in also and just back from holiday. High every day, I think due to a combination of the heat and guessing carbs in food. Was hardly in range the whole time. I feel terrible I wasn’t able to manage it better for my son (DS11). Also, he is usually great at managing injections himself but is going through a phase where he keeps injecting in the same sites and any suggestion from me to move results in a huge argument/meltdown. I’m really worried about the long term effects as we just can’t seem to get him in range these days.

Another one here with a 13 year old. It hasn’t gotten any better for me. I’m tormented by the damage I’m doing to him when he is high. Several years diagnosed and still can’t relax and accept its unpredictability. Doesn’t help that my sleep is so disrupted with his overnight care. It’s a shitty disease and I can’t bear to think of him having a lifetime of this to deal with.

@Ourholiday could you get one of the more advanced monitors, that alarms if he's going high or low. I think it's called Dexa scan. Or there is a libra freestyle 2 that I think is similar. It might allow you to relax more at night.

Sorry, I should have said he has the dexcom and very very grateful to have it funded but I struggle to keep him in range overnight and he is always alarming high or low. I think like many teens he has very differing days - one day hours of sport, the next hours of gaming - so it’s really difficult to get his basal right which means he is out of range a lot and I’m worrying about the impact it has on his health. But I’d rather do the worrying and getting up at night than have him do it. He has decades (hopefully) of it to come.

The technology and research appears to be moving very fast at the minute. Maybe it won't be decades before better treatments are available.

Yes it does get easier
DD was diagnosed at 7, she’s now 11 and we are definitely at a point of ‘sometimes diabetes just does it’s own thing, tomorrow we try again’
Its especially hard in children as they are growing and their hormones are developing so what worked one day won’t necessarily work the next
You won’t do permanent damage by having the odd high though, you really won’t, and lots of damage can also repair itself, DDs kidneys were failing by the time she was diagnosed but that took almost a year of being high (because of incompetent GPS not diagnosing her but that’s another story) and now with proper control and treatment her kidneys are pretty much back to normal
I actually met someone recently who had awful control for 25 years because he was young and didn’t care and he actually went blind, but again it took 25 years and with a few years of good control he actually has his sight back in one eye!
So yes, it is a worry, it can be very scary, but as long as you are trying and you are in range as much as possible, the odd spike genuinely is normal and fine
it is imposition be in range 100% of the time
You will learn to sleep at night again

Thanks all. It’s impossible to explain how anxiety inducing it is to anyone else. My best friend is T2 so think she gets it and doesn’t understand why I get so worried.

My T1 son is 16 and I'm much more relaxed about it than I was a few years ago. Reasons being

He has had his growth spurt and it seems to be more predictable than it was in his early teens.

He is taking responsibility for it.

The consultant is happy with his control.

He has a pump and Dexcom and is about to upgrade to t slim which I'm hoping will be another game changer.

He doesn't let it get in his way, knows how to manage sport etc

We've been dealing with it long enough so it just doesn't get to me the way it used to. I used to worry that he would die in his sleep etc but don't anymore.

Dunno if I'm being too complacent as it could all turn again.

@Focalpoint - thank you so much. That is exactly what I needed to hear. I did actually relax a bit over the summer hols and his numbers were fine. Our consultant is always very lovely with us and tells how amazingly we’re doing but I just find it hard to let go.

I think DS must be near puberty which I can’t imagine helps with differing insulin needs either.

Both my two would say that pumps have revolutionised their lives so is that an option?

As regards positive stories @Seriouslymole they are grown up now and older one works abroad in a sports and fitness related profession, youngest has a Masters and is about to go travelling. They both live 'normal' lives, work, exercise and travel widely. I never stop worrying about them totally, but yes it does get easier.

Sorry - realised I had a bit of name change fail! Yes we have a pump which is great when it works but we seem to have had quite a few failures recently which take a long time to come down from. He is also slightly allergic to the adhesive so is itchy all the time 😫

But thank you all for the positive stories - it really does help.

Hi, it does get easier I think because you will all become more confident with it. I do still have bouts of anxiety 6 years on but it rears it's head because of a change like the first residential trip or because I've accidentally given the wrong dose etc and then you overcome that because you have to and it's another bit of experience under your belt.

Wow I could of written your post even down the the pump failures and reactions to the cannulas! We're on an older style pump which at the time seemed like a good choice for ease and simple when he was younger as we knew the system but now it seems to not be so accurate and old fashioned compared to many others.

I think for me I have two type 1 children DS 13 and 11 and I literally cannot keep on top of it all the time, they are both very different and so I've had to accept it will never be perfect. I feel awful about it and feel so rubbish when people post these dexcom straight lines but that's not everyone's reality.

Forgot to mention we are 6 years down the line now and although you kind of learn what does and doesn't work I feel as teenagers this has been the most challenging stage as despite being really hands on the boys often forget to bolus at school or too busy/embarrassed when to with friends. They also sneak snacks and when our eat things they know they shouldn't.

We have had a good few weeks of time in range and then today when DS has clinic at school he is sitting at 15 with the same breakfast, same bolus, same morning routine, same basal. It’s enough to drive you crazy. Hopefully his DSN can help him this morning!

Thanks for all the solidarity - it does help. I am on a good few of the Facebook groups but see some many horror stories on there I am not sure it helps me to dwell on the “what could happen when it all goes wrong”!

A one-off reading of 15 is not a crisis, could it be a hangover from what he had last night rather than his breakfast?

Neither of the two of mine who have it have any horror stories for you – both now in their mid-20s. Of course they have hypos and there were times in their teens when they weren't being as careful as they should or testing enough, but in general they are fit and active and have never required hospital treatment purely on account of their T1.

@thing47 - see that’s what I need to hear - that not everyone is destined for hospital due to dka throughout the teen years and not everyone has horrific hypos that require ambulances.

I am in awe of those of you who juggle two T1s!