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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

AIBU diabetes not a big deal

167 replies

Fluffyscrubberdo · 26/07/2026 08:08

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??

OP posts:
pastadish · 26/07/2026 22:06

Differentforgirls · 26/07/2026 22:02

Diabulimia?

Yes diabulimia it’s also now called T1DE

edited to add - it’s an eating disorder or disordered eating where you control your weight by not taking enough insulin. Enough to keep you alive but blood sugar is high which makes you lose weight.
Over longer term the high blood sugar causes major issues. Anyone with a close diabetic person in their life knows the what the effects of high blood sugar are, it happens more than people realise

MostArdently · 26/07/2026 22:26

Just to prove diabetes can be chaos - changed DS’s pump cannula tonight. All fine. 2 hours later he is on 16. Corrections through the pump aren’t helping. Did a finger prick to check it’s not his sensor and check his ketones. Sensor accurate and only 0.1 ketones luckily. So put on a new cannula, gave another correction and now we are sitting watching his sensor to make sure it goes down. So a pump whilst great is not a quick fix and doesn’t make it simple to manage and my poor DS just wants to go to sleep and I’ve had to do 2 finger pricks and 2 pump changes on him tonight!

Changedforadvice · 26/07/2026 22:30

My 8 year old niece is not long diagnosed. I haven't directly cared for her, I'm hoping to get the diabetes training soon though, as I can see from my sister that it absolutely is a huge deal.

It's life changing for the family, looking after a condition where it's constantly changeable and must be monitored all the time, day and night, for the rest of their life. I'm in awe of my sister, BIL and niece for how brilliantly they are coping, although I know I don't know the half of what they're going through.

Getting the training will only give a small window into it. I hope to be able to give my sister some respite, but obviously that's nowhere near the situation of looking after the condition full time...and I'm terrified, because it's not something you can allow yourself to make a mistake with.

Ashamed to say I questioned a child having a phone at first but now know it's a crucial, life saving piece of medical equipment...and thank goodness the technology exists to help scan levels. I had a friend who had type 1 as a child who once made me do a finger prick, I now realise, to show what she had to go through multiple times a day, every day.

My heart goes out to anyone coping with a child with a type 1 diagnosis, and also my huge admiration and respect.

ShanghaiDiva · 26/07/2026 22:39

It’s a huge deal. DD’s boyfriend is a type one diabetic and I am in awe of him and how he manages his condition and his positive attitude. He is also a coeliac so we have to be incredibly careful regarding cross contamination.

Differentforgirls · 26/07/2026 22:43

pastadish · 26/07/2026 22:06

Yes diabulimia it’s also now called T1DE

edited to add - it’s an eating disorder or disordered eating where you control your weight by not taking enough insulin. Enough to keep you alive but blood sugar is high which makes you lose weight.
Over longer term the high blood sugar causes major issues. Anyone with a close diabetic person in their life knows the what the effects of high blood sugar are, it happens more than people realise

Edited

My son developed bulimia as a result of his diabetes type 1. What he did was eat, take his insulin and then make himself sick. It was awful. He had two teams looking after him, a diabetes team and an eating disorder team. They worked together. He nearly died so many times. None of us slept a wink. But we got him over it. It's apparently common in DT1 teenagers but his was unusual as he took his insulin.

GrumpySparkler · 26/07/2026 22:48

Hi @Fluffyscrubberdo
I am a mum to a child with T1D, so understand how relentless it can feel, but I wanted to offer you, what I hope will be, helpful and practical advice as you start on this journey with your child.
For background, my DS was diagnosed 2 months after his 2nd birthday, he's now 8 and his blood glucose is in range 80-90% of the time.

It's great that you have a CGM, we have used Dexcom G6 and G7 before. For night time, use a baby monitor. Put the Dexcom receiver next to it and then the other monitor with you so you know you'll hear it. If memory serves, the alerts do just get louder and louder until it's acknowledged, so you shouldn't sleep through it. To test it, change the settings for about 30mins during the day to say 7 as being a low reading, but don't dismiss the notification so you can see just how loud it gets! Obviously remember to put it back once you're satisfied.

As soon as you can, apply for DLA. I believe it's 3 months after diagnosis. It's quite a long form, your Paediatric Diabetes Team should be able to offer you some assistance completing it, if required.

We now use an omnipod for insulin delivery, which is a phenomenal bit of kit, but prior to that it was the old fashioned insulin injections, for about 10 months I think. So, in between meals we would give low carb snacks to avoid having to do extra injections. Things like pepperami, cheese, cooked chicken, cooked ham, cucumber, cherry tomatoes, strawberries, carrots, etc. Then it was just meal time injections, plus long acting insulin.

We've found the CGMs and pods sometimes quite difficult to remove, so we buy StoCare Medical Adhesive Remover spray, which makes them much easier to peel off! You can just get it from Amazon. Use the DLA money for this!

Utilise apps to help with carb counting. We were recommended Carbs & Cals, which my husband likes and uses, but I use one called NutraCheck for checking carb content. Again, use the DLA money for the premium version of these apps.

In the beginning, our Paediatric Diabetes Team tried to steer us towards using "normal" food to treat hypos, such as jelly babies and other sweets. However, we found they weren't fast acting enough and we'd always end up with a rebound high, so we started using dextrose tablets (another thing where the DLA comes in handy). They're essentially like a sweet anyway, come in loads of different flavours (our DSs favourites are cola and tropical) but because they're a really precise and fast acting dose of glucose, we don't tend to get the rebound highs when we use them.
Also, a Jaffa cake is a great combo of fast acting and slow release carb! About 8g carb per Jaffa cake.

It's really important to us that T1D doesn't define our DS or his life, so we try to show him people in the public eye who are also T1D, so he knows it doesn't have to be a barrier. Such as Alexander Zverev, Nikita from Strictly, Nick Jonas, Ed Gamble, Theresa May, Este Haim, Henry Slade and Chris Pennell.

Once you get in to your rhythm with it, it all becomes much easier. We can all now look at a plate and do a pretty accurate estimate of the carbs - I often joke that I could run a course on carb counting! Definitely try to keep good humour about it all - while all the other parents are desperately trying to get their kids to each their veg, you'll be trying to get yours to eat their chips! 😂

So 6 years later, my DS administers his own insulin, removes his pod and CGM, sets up his new pods, has started recognising hypos before his CGM does, plays tennis twice a week, goes swimming regularly, goes out on his bike, goes to Beavers and even did his first camp out with them before the summer holidays started - I was terrified, but he desperately wanted to go and he loved it - and does all the stuff every other 8 year old does!

I hope this is somewhat reassuring and helpful. You'll get there ☺️

wellstopdoingitthen · 26/07/2026 22:54

My ds was diagnosed at the age of 3.
It was a huge shock and adjustment. In those days the insulin he had (3+ times a day) meant that he had to eat a certain number of carbs every 2 hours. Chasing a toddler around the room to give him his injection was awful and we both shed a lot of tears. Injections had to be given 30 minutes before food.
So often restaurants would ask us not to inject him at the table as it upset other diners and told us to do it in the toilet. 😡

Members of my own family accused me of giving it to him as I must have eaten too many sweets when I was pregnant.
The GP who asked whether he would‘grow out of it’.
Everything was a fight. It was exhausting and yes many people said it was nothing because their aunt, granny, dog had it.
Watching tv programmes where someone would be treated for a hypo with insulin. 😩

A better insulin was available which meant that we had to calculate the carbs in each meal and then how many units to inject. By this time he was doing his own injections but obviously needed an adult to check he’d dialled up the correct dosage. His school refused and insisted that I went in every lunchtime to check his dosage with him.

We moved house (and school) what a fantastic difference!

He finally got a pump at the age of 11 and a CGM at 15.

He has fended off bullying and accusations of eating too many sweets 🙄.

Despite all this he has cycled across Europe with the scouts (thanks to a fantastic scout leader) studied well at school and survived university.

I am immensely proud of him. 💙

wetwiped · 26/07/2026 22:59

@Namechangee11 I could have written your post. DD diagnosed at 3 years old T1, she is 25 now. The battles we had with school, giving up work to make sure she was given the support she needed at school and the fear during the night - exhausting. Even kids parties used to cause huge anxiety. Never been able to simply wave her off and say “bye have a fun time!” without the added stress of speaking to the adults in charge, leaving a bag of supplies and contact numbers, then hanging about nearby. I can count on one hand the people, including family, who tried to understand and made an effort, I will be eternally grateful to them. It felt very isolating at the time.

GrumpySparkler · 26/07/2026 23:00

@Fluffyscrubberdo sorry. A couple of other things I should've included in my post, but now can't edit to add.

The CGMs can also leave a horrible residue on the skin, but TacAway wipes are really good for getting rid of it.

And while you're injecting insulin, ask for your child's prescription is for finest needle you can get, as this will make it more comfortable! I think they're usually referred to as "micro fine needles"

GrandTheftWalrus · 26/07/2026 23:09

My dh is T1. I posted on here a few years ago about him being in a coma due to dka. Hes been in hospital at least twice with it despite him managing it better. Its fucking terrifying as an adult to see it never mind a child. Im constantly on at him to check levels etc and we have full fat cola in the fridge at all times incase he goes low.

Dancingspleen1 · 26/07/2026 23:14

wetwiped · 26/07/2026 22:59

@Namechangee11 I could have written your post. DD diagnosed at 3 years old T1, she is 25 now. The battles we had with school, giving up work to make sure she was given the support she needed at school and the fear during the night - exhausting. Even kids parties used to cause huge anxiety. Never been able to simply wave her off and say “bye have a fun time!” without the added stress of speaking to the adults in charge, leaving a bag of supplies and contact numbers, then hanging about nearby. I can count on one hand the people, including family, who tried to understand and made an effort, I will be eternally grateful to them. It felt very isolating at the time.

This was my experience too unfortunately. My child was diagnosed at 12 months and now 19 years old. I was astonished by some friends lack of interest or empathy. You don't need direct experience in something to show care and support for someone. It was incredibly isolating but I did have a few oeople that got it and it made such a difference.
If you ever need someone that understands to chat to or if you just need a rant please feel free to private message me OP. ❤️

MageKing · 26/07/2026 23:15

I don't blame you for being annoyed. I do think that more than any other seroius disease, diabetes seems to be the least well understood by the general population. a friend whose son has T1 had a similar issue with her family and in laws - they were so blase. Even her own mum said she wanted to learn about it all to help.... then basically didn't pay any attention and still calls her so my friend doesn't feel comfortable ever letting her mum look after her DS alone.

MIL has T2. SIL used to drive me crazy because she was so judgemental about MIL's food options but she was completely clueless. She had no idea about the difference between general healthy eating and the specifics of diabetes.

pastadish · 27/07/2026 06:26

Differentforgirls · 26/07/2026 22:43

My son developed bulimia as a result of his diabetes type 1. What he did was eat, take his insulin and then make himself sick. It was awful. He had two teams looking after him, a diabetes team and an eating disorder team. They worked together. He nearly died so many times. None of us slept a wink. But we got him over it. It's apparently common in DT1 teenagers but his was unusual as he took his insulin.

@DifferentforgirlsIm so sorry you’ve all gone through that. I’m glad your son has come out the other side.
Taking his insulin has saved him from more heartache down the line because as you are aware it’s more common to not take enough insulin and the results of that are very serious.
Because the effects of this aren’t apparent for years people just don’t think anything is happening or will happen.

Lumpycat · 27/07/2026 06:34

YANBU. My close friend’s child was diagnosed in early teens and it has been very hard. We were discussing social breakdown type scenarios once and it brought it home when she said without refrigeration and a steady supply of medication he would be dead quite quickly. Horrible condition for a child to have and parents to manage.

Sartre · 27/07/2026 07:23

I think it’s easier to manage nowadays. I had a friend at school who was diagnosed at 6 and her whole life seemed to revolve around it. She had to pick a friend (sometimes ended up being me as I wasn’t afraid of needles) to go with her at break and lunch to inject and test her blood. She had Coca Cola and Mars bars in lessons to control it which we obviously thought was amazing at the time!

In secondary she really struggled because in year 7 we had an ice cream van in the school grounds so everyone would go and get sweets and she had to inject if she wanted to have some. She did indulge sometimes but she obviously had to jab herself before. She could dodge injecting all together if she didn’t have sugar at all but she wanted to fit in.

Now she has one of the machines that monitors her constantly and injects if it senses she needs it so her life isn’t so controlled by it. I know she said this was expensive and not on the NHS a few years ago, I don’t know if this is still the case.

MostArdently · 27/07/2026 07:24

@GrumpySparkler this is such a lovely and accurate post! New parents of TD1s should be given this. Thanks for the Este Haim tip too, didn’t know she had diabetes and my DS will love this as he’s a big Swiftie and they are good friends 😂

MyOtherProfile · 27/07/2026 07:35

Sartre · 27/07/2026 07:23

I think it’s easier to manage nowadays. I had a friend at school who was diagnosed at 6 and her whole life seemed to revolve around it. She had to pick a friend (sometimes ended up being me as I wasn’t afraid of needles) to go with her at break and lunch to inject and test her blood. She had Coca Cola and Mars bars in lessons to control it which we obviously thought was amazing at the time!

In secondary she really struggled because in year 7 we had an ice cream van in the school grounds so everyone would go and get sweets and she had to inject if she wanted to have some. She did indulge sometimes but she obviously had to jab herself before. She could dodge injecting all together if she didn’t have sugar at all but she wanted to fit in.

Now she has one of the machines that monitors her constantly and injects if it senses she needs it so her life isn’t so controlled by it. I know she said this was expensive and not on the NHS a few years ago, I don’t know if this is still the case.

What you describe is a closed loop pump. My family member has one. Some people get them on the NHS now but not many. I can say that while it has made a big difference there's still a lot of stress. It can pump in more insulin if it senses blood sugar is high but it can't do much if sugar is low so you still get hypo alarms going off, even in the middle of the night. Plus you get random issues even just changing the set every few days.
Children with diabetes still have a lot of issues during the school day, even the few who have the closed loop set.
One problem I have seen is that people can expect diabetes to be an exact science. Eat x, have y amount of insulin (by jab or by pump) and off you go. It is far less regular than that, sadly.
And then for children you get to later teenage when they want to drink like their peers and that throws a whole new spanner in the works.

NoHotGirlsInHell · 27/07/2026 07:39

I’m sorry OP. My friend has a T1 child and I had no idea how much it affects their lives until I saw it first hand.

she can no longer work as she has to be on call for the school at all times. Constant notifications on her phone of numbers. Hospital appointments very often for reviews. Cannula changes, set changes, alarms in the middle of the night. Can’t leave the house with a bag full of medical items. Constant calculations of carbs, processing what her child can or should have next. Trying to get her child to stop and sit down when low at a park. The worry about their future health. It’s incessant and it’s exhausting and it is never ever easy.

MostArdently · 27/07/2026 07:56

Pumps are amazing but not a quick fix and they only really take away the need for injections. You still get highs and lows to deal with, constant alarms including at night, still have to carb count and input that into the pump. They take away the visible aspect which is injecting so everyone thinks it’s far easier to manage diabetes with it but it’s all still there. Managing lows when exercising, highs after carb heavy food still all happen. The constant decision making never goes away and the other variables like stress, excitement, hot weather, other illnesses all still impact your glucose levels and need managing. Pumps are also not widely available everywhere, it very much depends on your NHS area, length of diagnosis, hba1c levels etc. The diabetes tech is brilliant and helps but it is not a cure and your life will always be governed by it if you have.

boredwfh · 27/07/2026 07:59

I read somewhere that a Dr said HIV is preferable to diabetes in terms of how badly diabetes affects your life. So I can well believe how serious it is.

Squirrelsnut · 27/07/2026 08:11

Steel Magnolias brought it home to me just how serious diabetes is. Julia Roberts' character is told not to get pregnant because of the strain on her organs. Until I saw it, I thought it was just a matter of watching your intake of sugary carbs and periodically injecting medication.
I'm in my 50s and can vaguely recall my aunt buying 'diabetes biscuits' in Boots!

drspouse · 27/07/2026 08:28

Fluffyscrubberdo · 26/07/2026 08:39

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 has his set to go off as an alarm (he wouldn't wake if it was buzzing). Can you change the alert ring tone?
YANBU at all OP - it is a big deal and people don't realise. DH was diagnosed in his 30s and is now 70 - it's been a big part of his life and he started out with injections, I think before even pens were available, and finger pricks.

Metalmotha · 27/07/2026 08:33

ShetlandishMum · 26/07/2026 08:29

No. I agree but most people with chronic illnesses receive this treatment.

Unfortunately, exactly this. People seem to dismiss a lot of serious conditions if it interrupts their narrative, most manipulate facts to suit their needs. Most don’t to maintain a sense of moral superiority. Eg thinking all diabetes is caused by bad diet - “I’m better than you as I don’t have it” “you enjoy playing the victim” depression “just snap out of it” - ie “I’m better than you, I have a strong mind” neuro diversity - “you just need to try harder/stop making excuses” ie I work hard/find things easy because I’m better than you.

People are idiots. Just ignore them

virgowoman · 27/07/2026 08:43

my 21 year old daughter has type 1. She was diagnosed at 18. the impact on her life has been huge. They have a psychologist in the diabetes department of our hospital and there’s a reason for that. Despite having dexcom and omnipod 5 pump, she’s still having to keep
on top of it 24/7. There’s only been a cure for
it since the early 1920’s. Before that, people died. It was a terminal illness. The way I think of it is that she’s holding back a terminal disease 24/7.

pollyglot · 27/07/2026 09:56

OP, you and your son are stars to have got through all that. People are just ignorant. x