Anyone here a parent who's also Type 1 diabetic? I need some advice!

[JemimaPyjamas]

I have been diabetic since the age of 4, am now 44. For the first time ever, on Monday night, I had a major hypo. I don't remember anything other than coming round to paramedics and being VERY confused.
I am, unreasonably I suppose, embarrassed as I was clearly out of control, and fitted (my tongue is very badly bitten, I am covered in bruises and have stitches in my chin.) As I have said, this has NEVER happened before.

I am in the process of sorting the medical side of why etc but what is bothering me is DS. He is 6 and it was he who first noticed something was wrong (DH sleeps upstairs as he was snoring!) So, he saw a lot of what happened inc the blood all over the walls and floor, and me, the paramedics and ambulance etc.

How is a good way to explain what happened and also explain how he has to call 999 if it ever happened again. He knows I am diabetic and I normally have such good hypo awareness that it is never, literally never, an issue - so this has thrown me a bit.

I don't want to scare him to death but I also need him to know the ins and outs and what to do if something happened again.

Any advice?

I’m not T1 but can’t read and run! You poor thing, you must be really shaken.

You say ds knows you’re diabetic - can you use some of the books aimed at children with T1 to explain the condition?

Is there any way you can afford / get funding for cgm given what’s happened?

‘Sometimes Mummy has a hypo and feels shaky. At those times Mummy needs sugar. The other day, I didn’t get sugar in time and it made me poorly. I needed an ambulance to make me better again.

If it ever happens again, this is what you do...’

Then teach him to say ‘my Mummy has diabetes; she needs sugar’? Role play dialling 999?

Oh goodness,what a scare for you all. I am type 1,for 28 years and have two children age 7 and 10. I must admit they probably aren't massively clued up about things,probably my doing having my head in the sand about it all still tbh!! Do you have a pump? Do you have any idea what caused this serious episode? He will obviously be shaken but he open and honest with him,and what he can do if he's ever in that situation again. I feel for you,but please don't be embarrassed about this as it will cause you to migrate further inwards...be open and honest and talk,talk and more talk about it.

Thank you for your replies!

I have no idea what caused it. I normally have plenty of hypo awareness, always have done, but didn't on Monday. I have been referred (bloody diabetes team said they couldn't see me - but that's a whole other thread!) finally to get a Libre Freestyle monitoring system so we can see if it's going up or down and when. I got to know a fabulous diabetic nurse who has since moved but we have managed to wrangle me seeing her as I was told to 'contact my GP' by the diabetes team in the hospital where I live. The nurse / friend thinks that I might have been having lots of mini ones and it's resulted in a big crash. Hopefully we'll work it out the more info we get.

I like your suggestions @Idonotlikeyoudonaldtrump Generally I am good with working out ways to say or do things with him but this has really thrown me. I am concerned that I might scare the shit out of him but also need him to know what to do and how important it is. The T1 books could be a good start. As it's never happened before it's like learning to deal with something completely new!

@han01UK I know that there really isn't anything to feel embarrassed about but I'm struggling with it a bit regardless. Like I said in the previous post, it's like dealing with a whole new thing! If I am hypo in the night normally I wake up, have some juice, go back to sleep. That's it! Be a bit sweaty at a push. I presume it's normally very predictable with you too?

Are you regularly testing your blood glucose levels pre meals and before driving (if you drive as requirement by the dvla).
I would definitely suggest that you do this and treat as a hypo if the levels are below 4. You should be getting some awareness below 4.
People who have had diabetes for a long long time such as yourself can lose the awareness so it may be you need to run the levels a little higher until you get your awareness back.
Hope you get sorted soon x

I would speak to the diabetes nurse they will have lots of resources as will diabetes uk.
My 5 year old knows how to call 999 - they cover it at school so you may just be adding to times when to use the number as oppose to brand new info

To add, as a child of a T1 diabetic please make sure you talk to them. Out of shame/embarrassment it wasn’t talked about with me and had long lasting impacts.
It may be that bloods are responding to hormones given your age you may be peri menopausal, who knows but it certainly made an impact on the T1 females I know

Oh you poor thing. I totally understand the bit about the bit and turn on the bruises. I've had that.

Please don't give yourself a hard time and don't overthink this.

I have total understanding. I have been a t1 since aged 1, so for 45 years, on a pump for 15.

I've had many bad hypos. Ds's have called daddy. And once called an ambulance.

I have been so proud of them, totally brilliant, never complain and I'm kind of ashamed that they have to put up with this.

but my DH says: no, don't think like that, they are lucky to have you, and they don't mind, they've never known anything else, and they live with my diabetes every day.

and when you think about it yes it's not great when your parent has any sort of medical condition...... but the other choices/alternative? that they never had you, you hadn't been born? Or the parent passed away?

it isn't 100% ideal. At least I've got you. remember that. don't overthink this.

My kids dad has T1. We are separated. Stuff I did with them after he had a significant hypo out and about with them and they all got carted off in an ambulance:

• learnt my phone number off by heart. We recited it on the way to school
• went through 999 stuff again
• talked about if daddy acting weird ask him to have sugar, make sure he tests if planning to drive.
• a bit more info about what type 1 is and what a hypo is so at least they know what is going on.

(They were 5, 7,8 at the time)

@bakebeans It's not a lack of testing, I do over ten a day most of the time. This is why it's such a shock that it's happened, given my usual control and having had it so long without an episode this major.

@Oblomov19 your post made me cry! In a good way, I mean. Thank you. It's good to get another perspective on it. Its tricky isn't it, you don't want him to feel like a carer but then you don't want to drop dead as a result of not wanting to make him feel in any way responsible.

@Digestive28 I didn't realise they did 999 at school. That's good to know , it won't be entirely alien to him then.

Yes usually pretty good hypo awareness here...I have a pump and have been using the Medtronic sensors intermittently but can't afford to self fund them permanently. But def good to see your ups and downs. Good diabetes care is paramount (mine are useless!) but I'm a typical nurse and just think I can deal with it myself!

The lady I am seeing is absolutely brilliant. She used to work at the hospital but doesn't any more but I got to know her when I had to have lots of ante natal stuff. She was great then too.

The diabetes team at the hospital refused to see me without a referral, which is crap. It's because the annual reviews at the GP had been 'spot on' in every way and there had been no issues to discuss, hence I haven't been to see the diabetic specialists in a while as I don't need to. They do know this and why too, it's pointless as it would be going through the same stuff as I was at the GP appt. It takes forever as the hospital ones are always running behind. You used to be able to self refer but now I've been told that I can't do that, I need to go the GP route. The last GP I saw, about something else, asked why I was on insulin (I presume they assumed I was Type 2) so I think the chances of them deciphering what is amiss and what needs to alter are slim! I can generally work things out myself easily enough, and it's not really anything major or even slightly scary (inconvenient more than anything) so this is a bit of a turning point.

I'm also T1 with dcs, my dcs are asd, they have a very basic payg mobile with their dad's number, my mum, mil and 999 in contacts, nothing else and they know this an emergency phone only to be used if I have a bad hypo or am ill or need help. So far they have used it to alert their dad when I had recurring hypos and couldn't get off the floor (luckily dh works close to home).

I have packets of jelly babies in every room and orange juice cartons on kitchen side, they understand that these are used if mummy has a hypo.

I have shown them visual clues of a hypo on youtube, so they know what to look for it I start acting 'different'.

Are you assigned a dsn at local hospital? They should see you asap, if they are useless then you can try and change to another hospital.

Totally agree about being possibly peri-menopausal and your hormones are wreaking havoc on your bgs, the same happened to me and I'm now on a pump, which has helped, but I still get random hypos.

The Libre is a great idea, as you can see your bg trajectory and, hopefully, intercept a hypo.

Sorry, you posted as I was typing!

I was wondering about the peri menopausal theory too, it would make sense.

I generally am never far from something I might need if hypo, and DS is aware of why they are there. The problem this time, I think, it that I crashed out of bed, and couldn't be brought round (DH did the hypo gel you put in your mouth AND the glucose injection, neither worked so the paramedics ended up doing an IV.)

Re being assigned a DSN, I explained in the last post when we crossed posts. It's crap. It's like you have to see them all the time when you don't have problems to have a chance of speaking to someone for help with something like this happens!

Yes I see, I have annual review with a Consultant and also with my surgery. It's shocking how care differs between Health Authorities.