How to help people understand how serious T1D is?

[Frenchpastryqueue]

Hi everyone, just looking for some advice/ experiences of others when your T1D DC goes to their friends house to play.

My DS6 was diagnosed last year and since then there’s been a sharp decline in the number of play invites he receives. I understand why, and I’ve made an extra effort to make sure he has lots of friends coming to us instead. All good.

At the weekend there, he was invited to a friends house and I’m incredibly grateful to the mum for offering to look after him. She actually runs an after school sports club which DS attends so she’s been given full training on how to take care of him. I wasn’t concerned at all about her having him. She then phoned me after 2 hours, completely calm to say that his Dexcom was reading 2.2 with 2 arrows pointing straight down and did I want her to give him a hypo treatment.

The bottom line is that DS is fine but bloody hell, what do you have to do to get people to
understand how serious this is? I think people look at him and see that he looks healthy and think that I’m just a paranoid, overprotective mother. The mum had full training but still didn’t react, there was no urgency at all.

Does anyone else have any experience of this or have any advice?

Are you worried that she should have acted sooner? Does your DS's Dexcom model have an alert – if so, you should be able to set this to whatever you want so that it goes off when your DS's BS drops to, say, 4, or whatever you are comfortable with.

Calm is good though, in general. I'd much rather my DCs' friends mums were like this than panicking or running around like headless chickens.

Hypo treatments are grim. Haribo or jelly babies are a much better answer.

Calm is good.

she clearly did recognise the seriousness which is why she phoned you. Presumably you answered straight away so the delay with treatment would have been a minute or so.

it may have been an “oh fuck, better make sure he doesn’t need an ambulance calling while I get on with treating”

if you hadn’t been contactable she’d have had to make her own decision.

Can you get his blood readings from his dexcom on your phone so that you can keep an eye on them when he’s not with you? Does he have a phone/device with an alarm that he carries with him? Dgs was diagnosed at 5 almost 6 years ago and he carries a small cross body bag with everything he needs at all times. His phone alarms if his blood sugar goes low or high so that he knows to treat or to alert someone when he was younger. I have to say, in the early days, I didn’t always make the right call and even recently misjudged the carbs in bubblegum icecream resulting in a hypo few jelly babies! It does get easier as they get older.

What am I missing? Sounds like she did exactly the right thing? Regardless of training I would want to run a decision to administer treatment past a parent if they were easily/quickly contactable. Did you want her to sound panicky rather than calm? What's wrong with calm?

If she thought you were being overprotective or irrational in some way then surely she'd have taken no action at all?

I agree it sounds like she stayed calm and called to run it past you before treating him. Are you worried she wouldn't have treated him if she couldn't get hold of you? It sounds to me like she knew what to do and was just double-checking because it was easy and quick to call.

Maybe next time he could have a snack before he goes, especially if he's going to be running around a lot playing?

Calm is good. I’d have been happy she’d checked with me, it takes moments. You will be able to relax more when you get readouts on your phone!
I know my sil didn’t ask anyone to do the training except her mum for ages (and my brother of course) as she couldn’t relax knowing someone else was supposed to be responsible. Except qualified professionals of course- eg the school nurse but school where they were refused to do the injections - the school nurse was on her lunch break at that time and couldn’t change her lunch break so she had to collect him to do them.

Calm doesn't indicate lack of urgency. She probably felt that as this was not a professional situation, she should and could afford an extra 30 secs to be your express permission. She would probably handle it differently if it happened at her sports club, because she is officially in loco parentis there.

By all means, impress on her that she has your blanket permission to react to developing hypos without calling first.

What was the treatment? Just a sugary snack? Or was it some kind of injection?

Being calm doesn't mean she wasn't doing all the right things. She checked the reading, she immediately calls you for clarification and she acted, all without scaring the crap out of your son.

She can have my asthmatic DS round any day.

Was she meant to check his levels sooner? Did you say you'll need to check every x amount of time? Presumably you informed her of the most up to date reading you had before dropping him? So she checked his levels realised there was a potential issue and contacted you straight away, no doubt keeping calm so as not to put the wind up your son?
I'm also assuming you son is too young to check his own levels?
I don't think she did anything wrong, unless she was meant to check earlier in the day?

Op said he was low so it would have been a short acting sugar like sweets, full fat coke or apple Juice etc and then a longer acting carb like a sandwich, but you can shoot up too high and then need to correct it with insulin.

Op I have a dexcom and actually you need to check it sometimes, check the blood sugar manually etc, maybe he didn't look stereotypically hypo? Maybe he said he felt fine so she rang to check what you wanted her to do?

Regardless I don't think your son will be asked back if you spoke to her the way you've posted here

I think that 2.2 with 2 down arrows means could get into coma any second, get sugar in them NOW. Dexcom is 15 minutes behind the current situation and some people lose consciousness quicker than others.

I think it needs to be reiterated that hypo is a medical emergency and should be treated as such. Yes, it's a pain if she overcorrects accidentally but that's potentially much less of a problem than a seizure or sth else.
I would expect her to give him harribo / dextro / apple juice / whatever he is using first and then call you.

'Medical emergency' implies to me that action needs to be taken immediately – that isn't necessarily the case with hypos, it can vary massively. I do get that it can be a bit scary at first, but I don't think treating it as a major cause of panic every time it occurs is particularly helpful to anyone.

I was taught and told it is an emergency and needs to be treated as soon as possible but maybe it varies as I am not in the UK? I don't have the first hand knowledge (I'm. Not T1D, my partner is). It's not a cause for panic, I agree, but definitely a cause for action. At least in my DP's case.