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3 year old recently diagnosed Type 1 diabetic

23 replies

Riven1993 · 15/06/2025 21:33

Hi all,

Just as it says in the title, a week ago, my three year old son was diagnosed with type one diabetes. He had been drinking more and wetting the bed/having accidents (which shouldn’t have been happening as he is toilet trained).

We spent 5 days in hospital, learning how to inject, what numbers we need to hit, looking at carb ratios etc. and came home on Friday night.

When in the hospital, whilst absolutely devastated, I was very pragmatic about it. I know what I need to do and need to do it to the best of my ability to ensure my son is okay. All the nurses kept saying ‘it will be fine’ and ‘it will get better’ and I believed them but now we’re home, I just don’t feel this way at all.

Things have been very unsettled, bloody sugar-wise (lots of hypos and hypers). His behaviour is deteriorating. He’s distraught at every injection. No one is sleeping well. I fear for his life and what it may look like. I fear I am not good enough for him and can’t keep him safe. He is clever but doesn’t understand what mummy is doing to him. I feel guilty. I am angry. I don’t understand why it was my sweet, sweet boy. No one can reassure me because people can’t reassure me with total certainty it will be okay. And there’s absolutely nothing I can do about it.

I am going to take all the support I can for us and my son from the diabetes team but just wondered if someone would be kind and genuine enough to tell me how it goes from here? When does it settle? Do you feel better now? Is your child well?

Thank you.

OP posts:
Quantum88 · 16/06/2025 04:33

So sorry about your son’s diagnosis. I am type 1, however I got it when I was 29.

It was a massive shock to begin with but it does eventually become something you live with in the background. I recommend having a look on Facebook for support groups, especially ones for parents with T1D children, it’s really nice to connect with people who have a shared experience.

Does he have a pump and a CGM? If not yet, I’d ask about this. If he has a fear of needles, I believe there are devices to help with this as well. I have a lot of hope in the technology being developed and believe this will help it to get easier to manage. There’s been a lot of progress even in the past 6 years since I’ve had it.

I would also have a look at the entire family diet and see what changes you can all make to support him. You’ll start to learn pretty quickly how much sugar is in everything and it will benefit the whole family if you all reduce your sugar intake! The more carbs/sugar you eat, the more insulin he will need and your margin for error will increase resulting in more hypos/hypers. Protein, vegetables and healthy fats are your friends!

Wishing you all the very best. It’s a steep learning curve and you will probably go through a few adjustment periods (with puberty, uni etc) but he will be able to live a full, fantastic life still.

x2boys · 16/06/2025 06:28

Oh that must be hard my son was diagnosed two years ago but he was 16 so had far more understanding, things will get easier my son has a Dexcom and i hope he will get a pump at some point as pp said ask about these as it really helps in the management of it

Riven1993 · 16/06/2025 14:13

Thanks to you both for responding @Quantum88 @x2boys.

Hes got the monitor and has been fast tracked for a pump due to his age- probably within 2-3 weeks. They need him to be on that as his doses are so low due to his age and they need to take units up in small increments.

Everyone always tells me it will get better so I guess for now, I just have to believe it will. X

OP posts:
AnnaQuayInTheUk · 16/06/2025 14:20

Not me, but one of my closest friends has a DS with T1 diabetes.

He is now in his 30s. He's incredibly sporty, very sociable, and manages his diabetes really well. There were a couple of hairy moments involving heavy drinking at uni which sent his blood sugars all over the place, but no issues since.

He's got a great job, he got married last year and he and his wife are now expecting their first baby.

No advice, but just wanted to share that, although it seems really scary, there is a bright future ahead of your little boy.

SortthisoutpleaseJesus · 16/06/2025 14:25

AnnaQuayInTheUk · 16/06/2025 14:20

Not me, but one of my closest friends has a DS with T1 diabetes.

He is now in his 30s. He's incredibly sporty, very sociable, and manages his diabetes really well. There were a couple of hairy moments involving heavy drinking at uni which sent his blood sugars all over the place, but no issues since.

He's got a great job, he got married last year and he and his wife are now expecting their first baby.

No advice, but just wanted to share that, although it seems really scary, there is a bright future ahead of your little boy.

This! It is no longer a life/death sentence and the will have him learning to inject himself and manage it asap once he is a bit older.
Yes, life will look different. No, he won’t be able to eat whatever mindlessly like other children. But he is young enough that he will know no difference.

bankruptedbykids · 16/06/2025 14:42

Hi. I'm so sorry to hear about your DS, my heart goes out to you. I know how you're feeling - my son was 4 when he was diagnosed and I definitely remember that feeling of not knowing how to do this. I described it to friends as like having a newborn all over again (feeling like you're not qualified to keep them alive, the lack of sleep, the list of ten million things you need every time you leave the house...) but without 9 months of pregnancy to get prepared!!
You'll have lots of highs and lows (I meant emotionally but blood sugars too!) over the next few months, but it does get better I promise.
My biggest piece of advice to you is to look for support online as it's always helpful to know others are going through similar and you're not alone (there are some great Facebook groups) BUT at the same time don't get sucked into too many rabbit holes if they're not helpful. I remember I joined a couple of large groups that I had to mute in the end when I recognised reading them was just adding to my anxiety and making the diagnosis even more all-consuming than it already was. There were a lot of people in the group who had "had to" give up work to manage it, and, for me at least, it really wasn't helpful in understanding it was perfectly possible for my little boy's life to be completely normal!

And if it helps at all, he does lead a completely normal life. He's 13 now, has been to friends, away with Cubs and with school, and even on an overseas residential trip...

Feel free to message if I can help at all. And if you're anywhere near me, I'd happily meet for coffee and a listening ear.

Take care

greencartbluecart · 16/06/2025 14:55

DH is over 60 now and is fitter and healthier and more active than most of his generation. So it’s quite possible to have a normal , happy and good life. There is little it should stop him doing ( there may be a thing about no solo skydiving but that is quite niche ) ( and I certainly won’t be looking into challenging that on his behalf )

the mental load of having to manage this all the time is immense I won’t lie - even now when the tools ard so much better than when he was younger it is constant and that can lead to battles with young people in particular who don’t like to be different

there will be groups of people you can meet with - I would try diabetes UK. DH went on sone of their outward bound style adventures with other T1s - that can help them feel normal and confident ( ok not at aged 3!)

it’s really hard to avoid hypo and hypers - so don’t beat yourself up about that - it’s not just what they eat , it’s how hard they think , how much exercise , the weather , any bugs going around, growth spurts - so it won’t ever be perfect. It just need to be good enough. As time goes by you will find it easier and you will get to good enough

every life has its challenges so hugs to you all but you will be ok

x2boys · 16/06/2025 14:56

Riven1993 · 16/06/2025 14:13

Thanks to you both for responding @Quantum88 @x2boys.

Hes got the monitor and has been fast tracked for a pump due to his age- probably within 2-3 weeks. They need him to be on that as his doses are so low due to his age and they need to take units up in small increments.

Everyone always tells me it will get better so I guess for now, I just have to believe it will. X

I think once he gains more understanding things will get easier bless him,three is very young
He will adapt and will grow up for this to ve his norm
Have you applied for DLA ,I think he.will definitely qualify at this age.

Sleeplessnightssleepydays · 17/06/2025 03:50

My son was diagnosed with Type 1 diabetes 5 months ago.He is in his late 30s.

It has been a life changing experience and it was and is difficult for him. But he has had great support and advice from the NHS and is now back to running and badminton and is learning how to live the life he wants again.

Interestingly when he was diagnosed he found out that one of the men he works alongside is also a Type 1 diabetic who was diagnosed when he was about 12 - he is now in his 50s. My son had absolutely no idea his colleague was a diabetic. So as well as getting advice and support from this colleague its been really inspirational to my son to see his colleague living a normal life with the condition.

Things will get better OP. Take all the help and advice the health care professionals offer you.

Riven1993 · 17/06/2025 09:17

Thanks so much for all your replies. It’s so, so helpful.

I know the positive stories are there, they just feel so far out of reach.

We are going out to the shop today for the first time, small steps, I suppose 😊.

OP posts:
greencartbluecart · 17/06/2025 10:04

Small steps are just right - just as you feel comfortable and grow more confident

remeber he’s a normal child and needs all the normal child life

viques · 17/06/2025 10:13

AnnaQuayInTheUk · 16/06/2025 14:20

Not me, but one of my closest friends has a DS with T1 diabetes.

He is now in his 30s. He's incredibly sporty, very sociable, and manages his diabetes really well. There were a couple of hairy moments involving heavy drinking at uni which sent his blood sugars all over the place, but no issues since.

He's got a great job, he got married last year and he and his wife are now expecting their first baby.

No advice, but just wanted to share that, although it seems really scary, there is a bright future ahead of your little boy.

A friend with a child with T1 said they had been told that teens often find dealing with their illness difficult as they get older even if they have managed the illness very well from an earlier age, they begin to resent the impact it has on their lives compared to their friends and can easily go off piste with diet and meds, though I think the new pumps will take this pressure off them quite a lot. It must be a depressing thought that this is something that you need to think about every day and plan into your life, I can imagine that for teens on the verge of independence it really hits hard.

OP make sure you make yourself the “expert” when it comes to your child and outside agencies such as nursery or school. See if you can persuade them to have either you or a paediatric diabetic nurse in to the school to inform teachers and other staff about your child’s care, diabetes in general and things to watch out for.

Mischance · 19/06/2025 19:11

Shekou Kanneh-Mason has type 1 and zooms round the world playing concerts. I so admire him.
It must have been a big shock for you all and you are in the adjustment period just now. The wonderful thing about young children is their adaptability. It won't be long before he just adds it all to the list of barmy things adults do and will see it as the norm.
Sending you lots of good wishes for the future ...

Riven1993 · 19/06/2025 19:53

Thanks all.

I wouldn’t say things have gotten ‘easier’ but I haven’t cried today, so there’s something. X

OP posts:
user1471515121 · 19/06/2025 20:49

My husband has Type 1 and was diagnosed at 18 months, he’s now 47 and it hasn’t stopped him doing anything he wanted to do. But as a previous poster said, the mental load can feel overwhelming at times.

My 5 year old son also has Type 1 and was diagnosed at 13 months. It was tricky (to say the least!) but as a type 1 family already we were probably more equipped to deal with the initial shock. He started reception last September and has absolutely loved school. And his school and his teacher in particular have been amazing.

It is hard work. A lot of the time there’s nothing to actively do but you are always on alert, always listening for alarms and checking levels. If I stir in the night I immediately reach for my phone to check their Dexcom readings. Having no ‘time off’ is what I find hard. Even when he’s at school I’m watching and monitoring.

But having said all that, my son lives his life largely the same as other 5 year olds and we try not to let it hamper him if at all possible. He views it as his superpower, with all of his devices making him a bit like a robot🥰

Hang in there, a week is no time at all to get over the shock let alone to get to grips with taking on the role of pancreas for your little one. It does get better, or more familiar at least!

Covidwoes · 19/06/2025 21:03

Hi @Riven1993I am not a T1 mum, but I have taught (and currently teach!) children with T1 diabetes. We receive training, and know all about sugars, ketones, hypos etc. It CAN be managed well in schools. We’ve even taken T1 diabetics on residential trips with no problems. Sorry I can’t offer advice re home life, but I hope my post reassures you a bit for when your DS starts school. I am primary, and the T1 diabetics we have at my school all have CGMs and a pump.

x2boys · 19/06/2025 21:55

Riven1993 · 19/06/2025 19:53

Thanks all.

I wouldn’t say things have gotten ‘easier’ but I haven’t cried today, so there’s something. X

I really feel for you your baby is only 3 it's going to be a struggle at first but on the plus side he's Young enough for him to know no different
Hopefully he will get a pump soon
I'm not minimising it nobody wants their child to be diabetic and insulin dependent but he can lead a relatively normal life .

thing47 · 19/06/2025 22:46

100% agree with the last paragraph of @viques' post, you do have to learn to be your son's advocate as you will come across a lot of people who don't have a clue, even those who think they do!

On a positive note, though, 2 of mine were diagnosed at 7 and 6. 20 years on and the older one is a sports coach and PT who has lived and worked abroad in pursuit of that career. The younger has 2 x STEM degrees, currently on maternity leave but will return to academic study once baby is a little older. Both have travelled extensively, including long haul, solo. They try not to let it stop them from doing anything they want, encouraged by us. HTH

Pinkflower100 · 19/06/2025 22:50

I haven’t read the whole thread so apologies if I repeat others but my child was diagnosed age 7. It was the end of the world, I couldn’t stop crying and my child was so upset at every injection. It was heartbreaking! We are now 5 years on and my child does everything others do. Diabetes hasn’t stopped anything - just entails more planning! It’s not fun I’d love to swap ans have it myself but in time you’ll realise it will be ok. Also, technology is always improving. I really hold on to a hope that they’ll be a cure one of these days! X

Ihatelittlefriendsusan · 19/06/2025 23:16

Hi @Riven1993

Contact Diabetes UK as they have loads of support on their website.

The hospital will also give you lots of support. Use it!

I know this time is scary, my dss had type 1 Diabetes. Don't search my posts on this as it does show the worst side of the condition.

Did the hospital give him a teddy bear while he was in? If not look into this one https://shop.diabetes.org.uk/products/buddy-the-bear#:~:text=Buddy%20the%20Bear%20is%20a,with%20Buddy%27s%20premium%2C%20plush%20material. It has devices so he has someone else going through it. It might also be worth looking at whether you can help him adjust to the injections by injecting the teddy too.

He will adapt really fast because he is so young.

Hope you are ok.

Buddy The Bear

Buddy the Bear is a luxury-feel, eco-friendly cuddly toy designed to help normalise the reality of wearing diabetes devices at home. With Buddy by your side, you won't feel alone anymore. Eco-Friendly: Made from environmentally conscious materials.

https://shop.diabetes.org.uk/products/buddy-the-bear#:~:text=Buddy%20the%20Bear%20is%20a,with%20Buddy%27s%20premium%2C%20plush%20material.

MumOnBus · 15/07/2025 23:32

It will get better. You are a good mum. Your DS will learn how to look after his sugars same as you taught him to walk and talk. With lots of love and patience. I know it's super scary but there is plenty of help out there. And us too x

Riven1993 · 16/07/2025 07:26

Thank you everyone. You’re all so kind. We are now 6.5 weeks since diagnosis.

My brain is absolute carnage and I didn’t know I had the brain capacity in me 😂. But he has been put on a pump which lessens the need for sharps and he can have unlimited snacks, without the upset of injections.

We are (hopefully, all being well, touch wood- all that) going on our planned holiday to Greece on Monday, something I didn’t think would be even on the cards. I am understandably anxious but I’m trying to maintain normality for him and he’s so excited to go.

I love him so much and he’s the best- I am worried about what’s to come and worry if anything ever happened to me. It’s a lot but big girl pants are on as I don’t have a choice and need to give it my everything.

Thanks again x

OP posts:
bankruptedbykids · 18/07/2025 08:23

Well done @Riven1993 sounds like you're all doing brilliantly and I hope you have a great holiday!
Make sure you have the letters from your hospital team allowing you to take sharps, pump through airport security. Though we've flown a few times recently and never needed to explain,, security staff have always been really knowledgeable.

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