Child becoming difficult about treatment

[Hoppy5]

T1 child age 13, 14 later this year.
We were doing pretty well.
This week they've been fitted with a pump
Now this: refuses to have high or low glucose alarms set, has switched Bluetooth off on phone so although they're on a libre we now have no alarms. Their phone is fingerprint locked. Gets angry with me any time I say we MUST have alarms on.
Re. The pump it's early days yet, been doing ok. However yesterday when it was time to change pump my child insisted on sorting the insulin which they basically made a right song and dance about, ended up making loads of air bubbles and it took ages to get rid of them.
Just been upstairs it's the middle of the night but I woke up so I checked (I have the libre app on my phone) and they were running high, woke them to tell them. Angry with me for checking that they'd heard me say what the reading was.
I'm so emotionally exhausted.. I know my child must be too, but how can we get past this? I'm so worried.

 

[Inka]

@Hoppy5 Have they given a reason why they don’t want the alarms on? It must be related to the pump surely? Is it because their doses are still being tweaked so they’re getting lots of alarms which is stressful/tiring?

Did they request the pump themselves? Which pump is it? Pumps are used not fitted. Maybe the pump and all the talk around it has re-focussed them on their diabetes and they’re finding that difficult?

Have you explained why the alarms are necessary and about the increased risk of DKA with a pump?

I would forget the refilling and bubbles incident. They just need more practise. Frustrating as it is, try to be encouraging rather than critical, even if they’re messing it up. If they feel criticised or inadequate, they might withdraw from engagement with their diabetes and you. Tagging @Sally71 in case she has any tips or advice, as she has a lot of experience and a child with Type 1.

Edited to add that 13 is a difficult age. There’s lots going on even without the Type 1, so don’t discount general unsettlement which is being focussed on the diabetes and pump as easy culprits. There might be other things going on too.

 

[Thebearcametoo]

My kid is almost 14 and has had a pump for a few years now. After he first got it he used it for a couple of months and then went back to injections for about 6 months. He struggled with being tied to something all the time. We go through phases of him not wanting to put a new cannula on. He sleeps through alarms so I have to deal with that. If he’s high but stable (12-14) I would probably just leave him alone but if not I root around for the pump and put a correction in without waking him. He’s like a baby bird and just opens his mouth while mostly asleep for me to give him hypo treatments.

We take as much of the burden of management off him as we can. We do pump refills away from nim and help him with changes of his dexcom and pump. He’ll sometimes have a few days without a sensor and that needs a bit of management but we get through it. And he makes his pump last as long as possible so some days we have to revert to a pen during the day and just add on a couple of units for basal.

We aim for ‘good enough’ and don’t sweat it if he’s high sometimes as long as the pump hasn’t failed (he’s now closed looping and the algorithm is pretty good). We’ve gone through phases of bribing/rewarding him for doing his changes with books he’s wanted or other gifts or just giving a treat as it’s a pretty miserable thing to have to do.

He may not want the alarms because of feeling self conscious about it among his peers. Or he may not want to be nagged by his tech when he’s already overwhelmed. Keep a light tough with what he HAS to do. If you have the app then you can always message him to do things - we find messages on the phone are less nagging than in person. We treat hypos immediately. We keep an eye on highs. As long as the cannula hasn’t failed it’s usually good enough.

 

[Inka]

I just looked back at your previous posts @Hoppy5 and saw you said your child is a girl. Bear in mind that puberty might be having an effect too. It can be a time of huge self-consciousness, hyper-sensitivity, insecurities and, of course, hormonal swings, and having Type 1 on top of that can be overwhelming emotionally.

 

[Thebearcametoo]

I just looked back at your previous posts @Hoppy5 and saw you said your child is a girl. Bear in mind that puberty might be having an effect too. It can be a time of huge self-consciousness, hyper-sensitivity, insecurities and, of course, hormonal swings, and having Type 1 on top of that can be overwhelming emotionally.

Oh yeah the hormones! My kid is a trans boy so has to deal with periods and stuff like that. It really affected his emotions and his ability to cope with his diabetes even before he worked he was trans so he’s been on the pill for a while as it helps even out the hormones a lot. Just to add that into the mix.

 

[Hoppy5]

@Hoppy5 Have they given a reason why they don’t want the alarms on? It must be related to the pump surely? Is it because their doses are still being tweaked so they’re getting lots of alarms which is stressful/tiring?

Did they request the pump themselves? Which pump is it? Pumps are used not fitted. Maybe the pump and all the talk around it has re-focussed them on their diabetes and they’re finding that difficult?

Have you explained why the alarms are necessary and about the increased risk of DKA with a pump?

I would forget the refilling and bubbles incident. They just need more practise. Frustrating as it is, try to be encouraging rather than critical, even if they’re messing it up. If they feel criticised or inadequate, they might withdraw from engagement with their diabetes and you. Tagging @Sally71 in case she has any tips or advice, as she has a lot of experience and a child with Type 1.

Edited to add that 13 is a difficult age. There’s lots going on even without the Type 1, so don’t discount general unsettlement which is being focussed on the diabetes and pump as easy culprits. There might be other things going on too.

Fitted is the language used by the hospital. I know pumps are used.
I know it's a difficult age that's obvious.
They wouldn't let me refill they got increasingly agitated and kept pushing the air in and out despite seeing that doing that was making it worse.
I've never been critical towards my child. I've always been encouraging.
Kind of considering deleting my post here tbh. We had a REALLY tough day.

 

[Hoppy5]

I just looked back at your previous posts @Hoppy5 and saw you said your child is a girl. Bear in mind that puberty might be having an effect too. It can be a time of huge self-consciousness, hyper-sensitivity, insecurities and, of course, hormonal swings, and having Type 1 on top of that can be overwhelming emotionally.

I never said my child is a girl. Someone assumed it!.

 

[Inka]

I never said my child is a girl. Someone assumed it!.

Ah, ok. Well, puberty is hard for every child and having Type 1 is just an added pain on top of that. It makes you feel different and you feel that no-one can really understand.

Sorry you had a bad day. I hope things improve.

 

[Inka]

Fitted is the language used by the hospital. I know pumps are used.
I know it's a difficult age that's obvious.
They wouldn't let me refill they got increasingly agitated and kept pushing the air in and out despite seeing that doing that was making it worse.
I've never been critical towards my child. I've always been encouraging.
Kind of considering deleting my post here tbh. We had a REALLY tough day.

I wasn’t criticising you. I understand you’re exhausted.

 

[Hoppy5]

My kid is almost 14 and has had a pump for a few years now. After he first got it he used it for a couple of months and then went back to injections for about 6 months. He struggled with being tied to something all the time. We go through phases of him not wanting to put a new cannula on. He sleeps through alarms so I have to deal with that. If he’s high but stable (12-14) I would probably just leave him alone but if not I root around for the pump and put a correction in without waking him. He’s like a baby bird and just opens his mouth while mostly asleep for me to give him hypo treatments.

We take as much of the burden of management off him as we can. We do pump refills away from nim and help him with changes of his dexcom and pump. He’ll sometimes have a few days without a sensor and that needs a bit of management but we get through it. And he makes his pump last as long as possible so some days we have to revert to a pen during the day and just add on a couple of units for basal.

We aim for ‘good enough’ and don’t sweat it if he’s high sometimes as long as the pump hasn’t failed (he’s now closed looping and the algorithm is pretty good). We’ve gone through phases of bribing/rewarding him for doing his changes with books he’s wanted or other gifts or just giving a treat as it’s a pretty miserable thing to have to do.

He may not want the alarms because of feeling self conscious about it among his peers. Or he may not want to be nagged by his tech when he’s already overwhelmed. Keep a light tough with what he HAS to do. If you have the app then you can always message him to do things - we find messages on the phone are less nagging than in person. We treat hypos immediately. We keep an eye on highs. As long as the cannula hasn’t failed it’s usually good enough.

Alarms have never been an issue before. My child's peers are really supportive, and during school time the alarm is set to just vibrate, when they've had the alarm on!
I'm definitely keeping a light touch and I would never nag and I'm not that kind of person. I think alarms are a pretty fundamental thing to have set up! I just wondered if anyone else had a similar experience when their child started on a pump? It's felt almost like a setback.

 

[Thebearcametoo]

Alarms have never been an issue before. My child's peers are really supportive, and during school time the alarm is set to just vibrate, when they've had the alarm on!
I'm definitely keeping a light touch and I would never nag and I'm not that kind of person. I think alarms are a pretty fundamental thing to have set up! I just wondered if anyone else had a similar experience when their child started on a pump? It's felt almost like a setback.

Like I said we had issues. I think in some ways having a device attached to you really brings home that diabetes is (currently) forever. My kid has gone back and forth with loving it and hating it and we had that big break not long after he started it. He’s mostly being easier about it all but we still have our days.

I’m not suggesting you nag. Our kids often find even the gentlest suggestions or reminders from us to be nagging though as they feel like they know it all Teendom is difficult for everyone and then add in diabetes and it all gets a bit much sometimes.

If they’re happy to do the filling then just leave them to it. If it doesn’t work for some reason they’ll have to change it sooner than usual and that way they’ll learn. If it becomes a regular problem then email your DSN and mention it and they can do a refresher at next clinic - my kids will listen to other people much more readily than me.

It’s hard for our kids. It’s also hard for us.

 

[Satan’s little helper]

Hello, I was a teen long before sensors came along. But I do remember being all “my buisness” when asked, “what did the doctor say?” Coming back from an appointment. (I felt at 13/14 big enough & ugly enough to handle this stuff myself.)
As an adult. For me these alarms are a pest. To my mind (for those who understand & support my situation at work.) it broadcasts my out of range status.
As adults we know this needs constant managment. I know I didn’t want to make my mum upset with my responses as a kid & certainly did my fair share of chores around the house to compensate. 😉

You have my best wishes. There isn’t a “handbook” for the individuals concerned.

 

[Sally71]

Just seen this. I don’t think I can help much as my daughter has always been very compliant where diabetes is concerned. She has been on a pump since she was first diagnosed at age 6 so it’s just part of life for her now and she just gets on with it. We did have an issue early on when a cannula insertion went badly wrong and the only way I could sort it out was by inflicting pain, we then had 4 months of having to chase her around, tears, bribery, you name it to try to get cannula changes done; eventually she realised that it would all be far less stressful if she just let us get it over and done with quickly. And we’ve never looked back.

I will say though, for the first 4 years we only had finger pricking, no sensors at all, for the next 4 we had Libre 1 which would only give you a reading if you scanned it, no alarms. We thought that was amazing! Only went onto Dexcom when she got her current pump 3.5 years ago. So whilst the alarms are useful, they are not essential. I used to do one finger prick sometime in the night just to check she was OK (it usually didn’t even wake her up!), and if she was low I’d give her some sort of sugary drink and she’d suck a straw quite happily without ever waking up properly. Got easier once we could scan.

Teenage years can be tricky, I absolutely get that you want your kid to be as healthy as possible, but arguing with them isn’t going to help. Maybe take a step back and let them get on with it on their own for a bit, and then when things have calmed down a bit, casually ask how it’s going one day and whether they need any help? They’ve got to learn to be independent one day. Dexcom Follow failed for us a couple of months ago, I suspect we’ll have to faff about reinstalling all the apps to get it going again, and we can’t be bothered with that at the moment. But I’m actually finding it quite refreshing not being tempted to check all the time what her blood sugars are doing, and as long as the doctors are happy then so am I.

Good luck, hope you can get things sorted.