AIBU diabetes not a big deal

[Fluffyscrubberdo]

Does anyone else have a child with type 1 diabetes and get annoyed at the people who don’t have it but maybe know an adult with it and therefore insist on always claiming it’s really no big deal to manage only based on their very vague connection to it??

It also enrages me that so many people don’t understand the difference between type 1 and 2 and still try to claim a toddler has it due to diet.

Do you have a dependent child with type 1 and think it’s no big deal and makes no difference to your life??

I appreciste its really tough for you now as shes so young
But as she gets oldsr and can start to manage her Diabetes herself hopefully things will still stabilise
My son was diagnosed at 16 and whilst he had a really awful time and was in intensive care
He mansges his own diabtes
Does she have a CGM

It's a huge deal for both the diabetic person and their loved ones, and the consequences of poor management are high.

Diabetes is so complex with many different forms and contradictory manifestations that mean most people (fortunately) won't understand how difficult it can be to manage. I had gestational diabetes and having to constantly think about food, exercise, stress levels, the temperature (anything that could affect blood sugar levels) was exhausting. Even though I know type 1 and type 2 diabetics, until I had GD I had no idea the extent that it affects your life. People saying ignorant things to you genuinely have no clue and YANBU to be annoyed.

You are doing a brilliant job with your toddler, I hope it becomes easier to manage for both of you.

You were told you would get a pump but didn’t?

To be fair our hospital set out expectations at the start, she will be priority for a pump but there’s still a considerable waiting list so probably around a year.

She’s are only newly diagnosed this last month and on a dexcom now but toddler levels can be so up and down so even the hospital have said to set an alarm to check once, and the if she’s quite low when I’m going to bed I will set another one or 2 to check. At this point I want to make sure I wouldn’t sleep through the dexcom reader buzzing, I’m not sure I would wake from it!

DH is recently diagnosed Type 2 and even that is bloody hard to manage (and he’s in his 40’s) - I can’t imagine dealing with Type 1 in a toddler

There was a thread on here just a few weeks ago
A poster wss worried about her teenage son
He had clsssic signs that he might be type1
Lots posters rightly urged her to take him to A&E
But some minimised it saying it wssent an emergency
One poster insisted that her friends DKA was cured by having cakes and biscuits🙄
The upshot was the Op took her son to A&E and he did indeed have type1.

I was at school with a girl who had diabetes. It seemed to me that if she felt a bit light headed she ate half a mars bar and was fine. I honestly thought that was as complicated as diabetes got until years later.
I understand now that it's way more serious than that. I had no idea there was so much constant checking and intervention throughout the day and night, so many future health worries.
I hope you're managing okay op and your family educate themselves and support you.

Both my niece and goddaughter were diagnosed when they were 1 (no family connections, just purely coincidental). Both are now almost 30 so they’ve grown up with it and we’ve all seen first hand how difficult a condition it has been for them and their families to manage.
It is indeed serious and important to manage carefully.
Both now have those pumps which they’ve said have been absolutely life changing, my niece said she’s been able to sleep through the night for the first time in her entire life.

sleep is so much easier when they get libre sensor - i’m with an adult type 1 - it must be even more stressful with a young child

I do feel for you OP - it’s constant and draining and scary

Maybe lack of knowledge rather than not caring?
Its a lot more than just jabbing yourself with a needle each day (which is enough on its own!!).

I remember that thread. The amount of people saying it was "no big deal" and could wait for a non-urgent GP appointment was shocking. I think a lot of it comes from ignorance but it's scary how many of the responses were so confident that it was fine to wait.

I hope she gets a pump soon. Is it possible or too expensive to get one and pay for it?

A friend of mine is t1 and so is her son and they are both on pumps. Her ds refused injections so I think they didn’t make him wait. It’s been life changing for both.

Many years ago a friend died from a diabetic coma, he wasn’t very good at monitoring blood sugars and went out on an absolute bender one night which I guess massively impacted his sugars. He never woke up. People forget how serious it can be. And how restrictive.

My 11 year old has Type 1, it’s life changing and you cannot switch off from it.

I’ve never known an auto immune disease have such the stigma that Type 1 does. And I think that stems from people knowing about Type 2. The two are not the same.

With no other condition would you get accusations that you’ve got it because your child ate the wrong food or two many sweets. It’s fucking offensive.

All I think about is when my child’s pump is due to be changed, has he treated his hypos at school or even heard his alarms and noticed! Have I got enough insulin, yet another Dexcom has failed!

This technology keeps them alive. That’s the bottom line. It’s terrifying.

DKA cured with cakes and biscuits!! It.must have been a hypo or the outcome would not have been a "cure".

I know
But even then cakes and biscuits wouldnt be the best thing to treat hypo
Worryingly this poster said she was Diabetic herself.

It's a massive deal but unfortunately you will have to massively reduce your expectations of other people understanding.

Most people don't know someone with Type 1. They do know someone with Type 2 and think it's the same thing. And probably think it's something to do with eating too much cake.
If they know someone on insulin it's probably someone with Type 2 insulin treated which is difficult but not the same intensity of difficulty as Type 1.
If they do remember someone from school having Type 1, it will be from before pumps, carb counting etc existed so the treatment has entirely changed.

We enjoy spotting other Type 1s in the wild..

The child of a friend of ours was diagnosed around age 2. It’s such a worry for parents. I was one of the very few people they trusted with their child due to my job, just having them for the day was exhausting I can’t imagine that level of monitoring/worrying 24/7.

Another consideration was the child was dairy free too, so lots of additional monitoring due to that. The DC is now 7 and managing well.

One thing that I would never have thought about was their dexcom was initially put on their thigh. When they started potty training it kept getting knocked when pulling pull ups up/down, perhaps keep that in your mind for when the time comes.

I hope your child has a good experience of managing their diabetes within school. A child in my eldest's class was diagnosed with T1 in Y4 and school have really engaged with and supported them well. Their mum was telling me how reassured she feels, particularly now he has received his pump. I really do sympathise because she also told me about what it's like when the management is difficult.

I haven’t got experience of diabetes of anyone close, but I can understand that it is serious. OP, i’m sorry to hear that you feel gaslit and that people are dismissing the seriousness. I’m wondering, do you think perhaps those people are actually trying to be optimistic as they want to make you feel better? If so, it’s clumsy of them and inaccurate, but maybe their intention is to try and be positive (in that way that people often do when they’re not sure what to say in a serious situation).

Thats probably becuse he was little my son wears his Dexcom on the back of his arm
But hes 19 ìi
It probably wouldnt be practical for a toddler as their arms are so small.

I've been surprised by how serious and terrifying type 1 is and I only really found out about it in the last several years. I knew it was a different type of diabetes than type 2 before that but in a way it seemed less serious because I knew so little about it. It must be very frustrating dealing with people's ignorance, especially when they're loud about it, about something so scary.

Someone on MN once said they were a nurse, they also said the best way to treat a hypo was by giving insulin. Another poster wanted to leave her type one husband as she witnessed his first ever hypo and believed he was in complete control and diabetes information was a lie, he’d told someone to fuck off. Imagine being so ignorant of a supposed love ones condition you convince yourself a human brain is capable of functioning during a hypo.

We don’t have a child with type one but I have it, people just don’t take it seriously. I did a sleepover event at the natural history museum and they said due to the number of rats they have all food had to be surrended. It turns out there were four people at the event with type one diabetes, the staff weren’t going to budge and said if we needed any food we simply had to find a member of staff who would fetch it, as thats possible when your low in a strange place in the middle of the night, until one of the parents asked staff to sign a disclaimer if their child didn’t have access to life saving medication in a timely manner that they would personally take responsibility. What they wanted us to do was no different to removing an inhaler or an epipen.

I’ve just been in hospital with a 25 yo On my bay with DKA. My dog is insulin dependent diabetic so I do have knowledge about medication/ food etc but seeing how unwell she was and how rapidly it happened was something else.

I’m sorry you’re having to deal with this and I agree that most people don’t know much about the condition other than what they read about or see on TV, including me.

Friend in her 50’s has Type 1 since being a child and she began having a hypo when she was at a crafting event with me a couple of years ago.

I knew nothing useful about diabetes but my friend was acting and talking slightly oddly (as if drunk) and I just felt something wasn’t right, but didn’t want to interfere as friend can be quite narky at times.

My DIL is an ER doctor and I texted her my worries and to ask if I should give her a boiled sweet or ring friend’s husband etc. but DIL said ‘no, ring for an ambulance now’. I did that then rang her husband who was a bit annoyed I’d rung for an ambulance and said she’d be fine with a glucose tablet that she keeps in her handbag. I tried the tablet and some lucozade but she wasn’t fine!

Luckily the paramedics arrived before him and managed to revive her. She was totally out of it and dangerously ill and it turns out her pump wasn’t working properly.

A few days later she told me that her insulin pump had received an update via Wi-Fi overnight that turned out to be faulty!!

Don’t be too harsh on other people OP. Berating them for a lack of knowledge about something is not going to help promote understanding.