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??

Forgot to say, when I was a first aider in secondary school some girls came rushing to me in absolute fear for their friend who had T1. She was unconscious in the toilets and they thought she was having a hypo.
I rushed there with hypo stop medication and it was a truly frightening situation. I knew an ambulance was on its way but there wasn’t time to hang around.
I rubbed the med inside her cheeks and hoping desperately to rouse her.
The paramedics arrived, checked her blood glucose level and administered glucose before taking her to hospital.
The following day, whilst she was off school to recover,she came in with her mum who thanked me profusely for saving her daughter’s life.
The girl wasn’t irresponsible, although teenage years can be testing, had felt low and had eaten a Boost bar. That did the trick until her bg crashed.
Had she not been in school where she had hypostop she may have died.
I’m not scaremongering but showing how utterly relentless this disorder is.
Big shout out to her friends who did exactly the right things.

@SleepingStandingUp my DS does scouts, the Dad should be able to carb count the smores beforehand if they’ve got the carbs and Cals app. It’s got a new function now where you can just take a picture of the food and it tells you how many carbs to input. She shouldn’t have to not have the chocolate or take it home. I remember once when my DS didn’t get a cookie at school, I was really sad for him and cross with the school. Fortunately one of the teachers taught herself to carb count and it made such a difference, I was so grateful. It is stressful.

It's a MASSIVE big deal. My son was diagnosed Type 1 aged 3 and died this year aged 34 of diabetic ketoacidocis. It's something you never get used to - the continual cycle of injections, hypos, neuropathy etc etc etc. Even when you do everything right and weigh out food and count carbs, your body can react differently depending on whether it's hot or cold weather, being anxious about exams, all sorts of things affect the control.

I am so so sorry

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

This is a big part of the problem. Diabetes is common (Type 2) so lots of people know someone with it. They also read about diabetes (Type 2) all over the internet. So, it’s not just ignorance. Many people mistakenly think they know all about diabetes - when, in fact, they only know a small amount about Type 2 diabetes, which is a very different condition.

So, they will then proceed to tell you all about their Uncle Harry who cured his diabetes by cutting out biscuits, or Mary their neighbour who doesnt eat sugar because she has diabetes. I’ve had Type 1 for many years and I still get people who know f* all about it telling me about how I shouldn’t be eating sugar when I’m treating a hypo, how I must have got it because I was fat (I’ve always been slim), how it would be cured if I just adjusted my diet blah blah blah. They’re not just ignorant, they’re very mistaken - but don’t even realise it.

This is also why they often don’t get how serious Type 1 is and how much relentless, exhausting work it is. It’s also why they don’t understand hypos. It’s terrifying. I even heard someone say that we use “epi-pens” and if we have a hypo we need our “epi-pen”. Very scary!

OP, you mention having to wait for a pump. Be realistic about what a pump can do, but maybe look at other hospitals to see if your DC can get approved more quickly. I was diagnosed at a slightly older age but the toddler I know with Type 1 had a pump approx 6 months after diagnosis. They’re ideal for a small child or for anyone who’s very insulin-sensitive, as you can do tiny boluses.

Someone on a Type1 facebook grouo im on.
Insisted she was managing her type1 diabetes with diet alone

Im so sorry for your loss
Its horrible condtiion

It's a massive deal, I can't believe anyone would dismiss it. I know some parents who sleep in shifts so one parent is always awake and able to monitor. I would suggest applying for an EHCP as soon as possible so a high level of care can be given when she starts school. I'm a HT and it's really difficult to find another £30K in the budget to fund a 1:1 that hasn't been budgeted for when a child arrives with no notice/paperwork.

My mum has type 1 and it is absolutely a huge deal. I have seen some horrendous hypos and hypers over the years. Very grateful for the arm patch and modern technology!

Cant even imagine how difficult it is for you with a child.

I think the people who think it’s no big deal only have experience with type 2.

Hi OP, my son was diagnosed when he was 11. It’s a long, hard road and I feel for you because people don’t get it.

I just want to advise you on one thing. Apply for DLA.

It’s not means tested and your child is eligible for it.

We used it to pay for aqua libra when it wasn’t available on the NHS.

It was a god send.

Your family won’t get it. The lack of sleep and the constant worry.

Try to join a group for parents with children who have type one as they’re the only ones who do get it.

Just being able to talk to other parents really helps.

❤️

My son was diagnosed at 16 hes 19 now hes hes had to inject himself numerous times around friends ( hasent been offered a pump yet) he gets people asking him how he can do that as they couldnt do it 🙄
I mean it keeps him alive i think anyone would find a way if they had too.

Yeah - I was diagnosed type 2 in my 50s and have never been overweight. I’ve always tried to eat healthily.
My mother got it too and so did her brother- who was very fit - so it’s definitely genetic. It’s upsetting reading every day that type 2 is linked to obesity.
I’m sorry people are minimising your daughters type 1 and I totally understand how distressing that must be. I get it because everyone around me minimises my diabetes too. I know that my situation is not as bad as what you’re going through but it’s still irritating to be told I’ll be fine because I’m really careful about my diet and look slim and healthy. People just can’t seem to understand that my blood sugar levels can still be high - and that it’s serious.

As an adult recently diagnosed with T1D. Yes it’s a big deal. It’s life-changing. No matter what age. And scary. Better with tech, but still a lot.
And the confusion with T2. Yeah. Very irritating.

My DD was diagnosed at 3 and for me it was catastrophic... In those days schools could refuse to have her and they did and it completely stopped my career as I had to go into school to test and inject her when she was very young. And people are stupid and they don't get it at all.. I spent years absolutely terrified she would die, and had grand mal fits caused by low bloods in the night and I spent a couple of years sleeping on her floor. All things considered and knowing what I know now she was relatively well and had a good HbA1c but I was consumed with fear I would lose her. I did not, she's 25 and a friend of ours' young son has just been diagnosed at 13... He went almost straight onto a pump and has continuous glucose monitoring... And his Mum is devastated too, absolutely floored and cannot imagine how we managed with much less tech. I wouldn't wish it on my worst enemy, to have that constant threat to your child's life is very hard to live with.

My stepson's mum treated his type 1 like it was no big deal. As such, so did he.

He died aged 16 as a result of her negligence and lasiez faire attitude.

So I am with you @Fluffyscrubberdo, it gives me the absolute rage.

I'm type 2 and have been for around 20 years. Managed with diet for a few years but medicated now for around 15 years. Tried it all - fast 800/low carb diet, lost 5 stone, still diabetic. But there's a family link - every 1st born child on my Dad's side. I count carbs to avoid having to go onto insulin like my Dad did at 40. I get so fed up with throwaway comments like "you can diet your way of that though can't you".

I would find it terrifying to have a child/partner with type 1, it's so unpredictable. So I have the deepest respect for those on here treading that path. And yes there is a huge amount of public ignorance about diabetes in general.

The reason some people think type 2 diabetes is not serious is because so many adults have it, it's 'safety in numbers' mentality. Diabetes is a serious illness and should be carefully managed, and with type 2, incooperate life style changes. Most people I'm guessing have no idea the difference between type 1 and type 2.

Theres no doubt its a serious, hard to manage condition that also carries additional risks for other diseases like cancer.

But to reasssure perhaps anyons with little ones etc, it can be ok! My cousin is type 1, it was undoubtedly v hard as a kid (had some other endocrine issues too). But now as an adult has an insulin pump & leads a full, happy life.

Ps my dc doesnt have diabetes but has a different endo condition requiring daily injections, i get how disruptive it can be

Of course it is. People can literally die. Amputations still happen. Also, some people have had types 1 and 2 misdiagnosed by their doctors. Some people say you can diet to get rid of it-the Fast 800 does not work for everyone. Yes, it's good it does for some, for type 2.
It has a knock on effect on a lot of things.
The most disgusting thing I saw I was someone complaining about a sufferer (yes, they want that word used!) having a dog that helped them manage their diabetes, just because they didn't like dogs.

Huge deal my daughter is 8 and type 1 since 2.5yrs it’s brutal, my sleep is disrupted every night at least once. She can’t bounce on her trampoline without rushing for juice after about 15 mins, even with a snack. We have alarms that follow us every where. Just going out for dinner if her sugars are already high creates huge problems eating then crashing later we just can’t seem to get a break. It’s hugely volatile. I’m a single mum and dad has no input, I run my own business. I’m exhausted but she’s loved and we do as much as we can. It’s absolutely not easy.

Undoutably diabetes type 1 has become a lot easier to manage with Cgms and pumps but not everyone gets the pumps straight away and having to deal with a toddler with it who doesnt really understand all the interventions must be incredibly hard even now

People don’t understand it and generally think you get diabetes by eating too many sweets even type 1.
However it’s quite common for young people to not take their condition seriously enough, maybe they don’t want to be different or they want to do/eat the same things as their friends.
Also diabulimia or T1DE is more common than people think.
The effects of long term high blood sugar will be seen in 10/20/30 years and it’s devastating

Type 1 diabetes is a life-changing condition. Don’t understand why anyone can’t see that. You need all the support you can get.

Diabulimia?