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My 10 year old has just been diagnosed with type 1

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This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
L

Lilmssquirrel

Active Member
Relationship to Diabetes
Parent of person with diabetes
Hello

Right now I'm sat in hospital watching my daughter sleep. She was diagnosed a few hours ago.

She had been at her dad's for two days and he rang to say she had an insatiable thirst and had she been like it previously. I said no, I'd speak to the gp in the morning. Fast forward two hours and I get a call to say she's being tested for DKA. Thankfully it was caught just in time.

Looking back, maybe the signs were there. She's lost weight during lockdown, but has grown at least two inches so I'd assumed she her body was balancing out and her puppy fat had gone. My best friend is a paediatrician and even she said it was the last thing she would have thought when we saw her last weekend. Likewise she'd assumed the changes were lifestyle and hormone related.

DD has had a couple of bugs but speaking to our GP there was no real concern as there were no covid symptoms. We also had a bereaveof a close family member recently which has perhaps clouded the signs

Anyway the past is the past and I can't undo what has happened. But tomorrow she's going to wake up to a life that has changed for ever and make her stand out from her peers.

She'll expect me to leas her through this and I have no idea where to begin.

To top it off (and yes this is super trivial in the grand scheme of things) I run a cake business so need to work through how I deal with that.

Would really appreciate any advice that is going. It all feels quite big and scary right now.

Thanks for reading

Rebecca xx
 
Invest immediately in a book written specifically for people exactly like you - and her dad!

Type 1 diabetes in children adolescents & young adults by Ragnar Hanas

which gets updated with the latest advice, think it's on Version 3 by now.

It feels big & scary cos it is - so don't be whatever surprised if you start crying at any stage! That does wear off, eventually but it takes its own time. The two if not 3 of you all have new best mates - the Paediatric Diabetes Team, and the Specialist Nurse will be the front woman who you both get the most day to day support from - and remember, they are ALL there to help YOU as well as your daughter, they know you are clueless just now so don't be scared to say so! - we all were at first.

Massive {{{Hugs}}} to all of you.
 
Thank you. I've been lying awake googling the hell out of everything and it seems terrifying. One minute I read a post about whether or not to bolus (what even is that?) candy floss, the next I read she could die from a hypo and I've no idea how to know what the signs are. And then I read about needing to test at night too - I don't think I will ever sleep again.

I am sure everyone else has been here ("why her, why not me?" and "why did I let her down and not protect her from it?")

She will no doubt take it in her stride and be better at managing it than me. I'm sure we'll be fine but right now I feel in a void and so alone. I've since remarried (14th March this year - she was ten that very day) and it feels this past month with the loss of my dad like we've fallen off a cliff. My husband hasn't scooped me up... He couldn't deal with the bereavement as it bought back too many memories of his dad so I feel like this is all on me too... He will no doubt stick his head in work today.

Sorry for the pity party for one. I just need to get it out before I put my "mum face" back on when she wakes up x
 
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Hiya and welcome to the forum.
Bolus is the insulin we take to cover our mealtimes and basal is our background insulin but the diabetic team will explain that all to you. A good idea for you now is try not to frighten yourself with too much googling but write down any questions you have so you don't forget to ask them in the morning.
As she is only 10 i think its a good idea to ask about the option of an insulin pump as i think it makes life a bit easier for them.
And please don't beat yourself up too much it must be one heck of a shock for you.
Sorry also for the lack of support you get from your OH, you both could do with him on board right now.
One other thing, please ask anything you want to know or are unsure of as there are no silly questions here and everyone is really informative and supportive.
Sending you hugs.
Adam.
 
Hi Adam

Thank you so much. It's been a rough few hours but the numbers are headed in the right direction which is a relief.

Hubby has just revealed he went into shock because he thought we were going to lose her. He's been in tears this morning and I think we will do okay eventually.

Thanks for the advice about the pump. I did a bit of reading other people's threads on this and that helps. I am rubbish at taking meds myself so getting to grips with this new world terrifies me as I literally feel like I have her life in my hands.

Thankfully I'm in good hands here xx
 
Hello @Lilmssquirrel
You certainly have a lot to deal.
It is good that you have found this forum though as there are several Parents here with a lot of knowledge and experience of helping their children with Diabetes.
I will copy some of them in to this message, and I am sure some will be along to help you soon.
@LucyDUK. @Thebearcametoo. @stephknits. @Sally71
 
It’s absolutely not your fault you didn’t spot any signs. It’s so easy to put things down to other things eg I thought I was weeing a lot because I was drinking a lot!

It sounds like you’ve had a huge amount to deal with recently. Sending you a hug X

Don’t be overwhelmed by all the new terms or all the things you see online. It’s still early days and you’ll gradually pick things up. To put it simply, you (and your daughter later) will have to do a job her pancreas previously did - keep her blood glucose in range with the help of insulin (basal insulin to give background control over 24hrs and bolus insulin to give at mealtimes when she’ll need a ‘chunk’ of insulin to deal with the food she’s about to eat) Sorry for ‘chunk’ - it’s too early to think of a better word.

Ask about carb counting as carbs are largely what puts blood glucose up. You’re aiming to count the carbs in a meal and, with dose advice from her team, inject the correct amount of insulin to deal with those carbs.

I second the suggestion of a pump. It’s so much easier and more flexible.

Hypo signs are soon learnt - sweating, confusion, shaking, etc

Cake won’t be off the menu but it will need a bit of thought, portion control and treat status.

Mainly - don’t panic. You and your daughter aren’t alone. There are lots of us Type 1s and we’re all here for you on the forum. Take one day at a time and know that your daughter will be ok. X
 
Morning and welcome to the forum. What a lonely and scary night you have had, I am so glad there were lovely forum members up and keeping you company @trophywench @brisr949 . My daughter is a bit older than yours at 16, but was diagnosed on 1st May. I remember very well that first night, I was doing exactly as you were and posting on this forum. I wasn't allowed in to see my daughter, because of the covid situation, so sat in the corridor crying. I, however had a huge advantage, because I already knew the forum and the amazing support as I have type 1 too. Being a parent in a whole different ball game and I take my hat off to every single one of them.
The advice about taking notes is key. Either on your phone or a notepad if you have one. Write down everything, it is so hard to take in information when you are feeling so terrible. Also don't be afraid to ask the same thing as many times as you need to hear it.
We are all here for you, wishing you all the best for today.
 
Hi and welcome.

Your diabetes team will hold your hand through it all. They will talk through with you and your daughter what diabetes is, what the insulins she is on are for and how they work. How to carb count. Etc. You may not get as much face to face support as we did but here clinics are back face to face so you may get the same but even if not there will be phone and video support. The first few weeks it feels like too much information and your head will be spinning. But slowly you will start to feel more confident. Your team are there for all your questions and you will have a variety of ways to contact them out of hours. When we were discharged we were told to call the children’s ward if we needed anything in the middle of the night on top of the diabetes on calls (which tend to end around 11pm. You won’t be expected to do it on your own.

My daughter is 10 (she was diagnosed just before her 9th birthday). Happy to chat and if it would help set up for them to chat to each other.
 
Good morning
Gosh that all brings it back for me! My mum is type 1 so I was well aware what the symptoms of diabetes are, and I completely missed the fact that my daughter was drinking loads, just thought she was being greedy with apple juice and tried to make her switch to water, even though I could also see that she was skinny and could smell ketones on her breath... I didn’t want to be a neurotic mum and rush her to the doctor just because she might have a condition that I knew a little about, and I’m not medically trained and for a long time wondered if I was imagining things or making a fuss about nothing. So she was getting pretty bad before it really slapped me in the face that no I wasn’t imagining it and even if it wasn’t what I thought it was, clearly something was wrong. Then rang the GP and told them I suspected diabetes and unfortunately they were so used to dealing with type 2 that they treated it as completely non-urgent and I ended up waiting over a week to get the critical blood test which confirmed her blood sugars were sky high. Unfortunately at the time I didn’t know enough about it to argue, and by the time we got the test done she was going into DKA and was very poorly indeed. I felt very guilty about why didn’t I do something sooner, BUT we did get her to hospital in time (just), and we are now 8 years down the line and she is doing pretty well.

So everything will be pretty confusing and scary at the moment and you will probably be in tears a lot, that's ok you do have to grieve. But you will be strong too, because you have to. Work with the medical team. First they will show you how to do injections, a long acting one every 12-24 hours to keep her stable between meals, and a short acting one to be taken every meal time. They will probably start on fixed doses and will have to guess a bit how much to give her and then tweak the doses. And don’t worry if she doesn’t get normal numbers straight away, if she has been high for a while it would make her feel bloody awful if they dropped her straight back down to normal range so they will probably do it gradually. Then once you’ve got used to that they should teach you carb counting, which means you vary the dose according to what is about to be eaten, which makes it much more flexible, if she wants a piece of cake she can have one as long as you give her the correct dose of insulin to cover it. There are test meters available which have a “bolus wizard” to help you with this. Ask about pumps - they are not a magic fix, and involve a lot of hard work, but they make things much more fine tunable which makes it much easier to deal with illness, exercise, foods which are slow to digest, birthday parties etc. Not everyone who wants a pump gets one, but I think they tend to prioritise children so worth asking. They also mean less needles as you only change the cannula every 2-3 days and are then just pushing buttons to do your “injections”.

Hypos become a lot less scary once you’ve dealt with one or two, most of them will resolve fairly quickly as long as you deal with it straight away.

And that's all I will put now, please just take it one step at a time, work with your medical team and try not to google too much! You can’t possibly learn it all at once it's too much to cope with. We went onto a pump only 8 days after diagnosis, when we’d barely got used to doing injections, and OMG talk about brain overload, I barely knew what day of the week it was half the time and my brain definitely hit the wall and couldn’t think any more! But we made it through because we had to. It took me at least a year before I felt confident that I really knew what I was doing though without having to check every little thing with the nurses all the time! Nowadays we hardly see them apart from the 3 month check up, which is a success I guess as it means most of the time we are just getting on with it.

You are not in a nice place right now but it does get easier - honest! Good luck 🙂
 
Morning @Lilmssquirrel
What a night!
Don’t be too tough on yourself for not noticing the signs, or at least not thinking anything of them, we didn’t really with my son either until we had the benefit of hindsight and we weren’t simultaneously dealing with bereavement or anything else.
If you haven’t already, today will probably be the day you get to meet the DSN and rest of the team who will be looking after your daughter now - they’ll talk to you more about long term treatment plans and what day to day things will take a bit more consideration going forward and you’ll have the chance to ask all the questions, they will also stay in close contact once you go home.
You will sleep again! there is so much tech and equipment designed to make things easier for your daughter such as pumps and CGM and some of it even lets you keep an eye on her levels remotely - including from your own bed for a bit of reassurance overnight.
For now though (and I probably wouldn’t follow my own advice here) try and avoid Google, at least until you know how your daughter will be managing things, eg pump/pens then at least you can look at more specific things rather than everything diabetes which will bring up huge amounts of stuff, some of which may be irrelevant.
You’ll be ok, she’ll be ok - but keep coming back and posting questions or just sharing how you feel, as you found in the early hours this morning there’s almost always someone around.
Best wishes to you both.
 
You are blameless! There is nothing that anyone can do, or not do to prevent type 1.

A few hours delay (or even a few days) would make no difference to the eventual out come.

Not only are you not alone, but there are about 400,000 people living with type 1 and that is just in the UK.

Yes it is a serious condition and does need care and attention, but the difficulties are nowhere near as bad as you might think.
But what do I knoiw I have only had type 1 for 47 years.

I will make two predictions:
In a year's time you will wonder what all the fuss was about.
In five or six years time you will be told to "stop worrying, Mother, I can look after myself perfectly well."
 
Welcome to the forum @Lilmssquirrel , but sorry you have needed to join it.
You have had an awful night but I am glad there were people around here, and that you have had support from other parents.

As everyone has said it is very confusing at the start but you will quickly get to know the basics and then you can take your time to learn together. The Ragnar Hanas Book that @trophywench recommended is excellent and so well explained.

Keeping a list of questions that arise is a useful idea. I still do it now and gather questions ready for my appointments. You will have support from your specialist team. They are there for you and the questions you have they will be familiar with. Nothing is considered silly on here. Just ask. Loads of us here to help at any time. Also a good place for a rant if needed.
 
leonS said:
You are blameless! There is nothing that anyone can do, or not do to prevent type 1.

A few hours delay (or even a few days) would make no difference to the eventual out come.

Not only are you not alone, but there are about 400,000 people living with type 1 and that is just in the UK.

Yes it is a serious condition and does need care and attention, but the difficulties are nowhere near as bad as you might think.
But what do I knoiw I have only had type 1 for 47 years.

I will make two predictions:
In a year's time you will wonder what all the fuss was about.
In five or six years time you will be told to "stop worrying, Mother, I can look after myself perfectly well."
Click to expand...
I'm smiling through floods of tears. Thank you so much x
 
Thank you so much everyone for your thoughtful and lovely responses.

It's been another trying day. I managed to get my head down at around 11.30pm and was awake again at 1am panicking that she was so still.

The hospital teams have been great but because I asked to have her moved closer to home, we wasted yesterday waiting for a bed to be freed up so I've not yet met my local support team. I just kept having to rehash the back story to a sea of changing faces when all I really want to know is "what should I put in my tesco order for Saturday?"

To make things even more complicated, my ex husband has reminded me why he is the ex. He's refusing to come to hospital as he won't wear a mask and it's a strict one parent at a time policy so he's refusing to come without his girlfriend. At Bristol they have security men on every door handing out masks and gel (Gloucester was like butlins in comparison) and so even if he did make the trip, I fear a row would break out - at glis he breezed in with no mask and then apparently had a go when one of the staff challenged him.

He also has to be trained to look after her.. Whilst he is T2 in remission, I can't get my head round if his lashing out is a response to this change and if he will put her first and come in for training (unlikely) or point blank refuse as its all too difficult.

DD has been a star so far and is already running the show on the prick test front (telling the nurses in Bristol about how her accucheck works as Gloucester have a different model to Bristol) but she's due to go to him for five days in mid August and I am not comfortable he'll be ready to do what she needs. I know he's likely very scared and overwhelmed too but I feel like I'm walking on egg shells here when the priority needs to be the brave little girl who is owning diabetes already.

Selfishly I probably just need gin and sleep but it means so much reading all your stories and kind words. I know in a Year I'll be wondering what all the fuss was about. Now if I could only find the fast forward button...

Much love to you all xx
 
Hi again, how is she? How are you feeling now too?
 
Thebearcametoo said:
Hi and welcome.

Your diabetes team will hold your hand through it all. They will talk through with you and your daughter what diabetes is, what the insulins she is on are for and how they work. How to carb count. Etc. You may not get as much face to face support as we did but here clinics are back face to face so you may get the same but even if not there will be phone and video support. The first few weeks it feels like too much information and your head will be spinning. But slowly you will start to feel more confident. Your team are there for all your questions and you will have a variety of ways to contact them out of hours. When we were discharged we were told to call the children’s ward if we needed anything in the middle of the night on top of the diabetes on calls (which tend to end around 11pm. You won’t be expected to do it on your own.

My daughter is 10 (she was diagnosed just before her 9th birthday). Happy to chat and if it would help set up for them to chat to each other.
Click to expand...
Thank you so much @Thebearcametoo . We'd love to take your very kind offer up in a bit when the dust settles xx
 
That was good timing, i just asked as your post came up lol.
 
brisr949 said:
Hi again, how is she? How are you feeling now too?
Click to expand...
She's doing great. Sugar has dropped down from 22 at bedtime (10pm) to 17. Ketones are back to 1.6 from 0.8 so they've done another blood gas and she's dropped back to sleep.

I am so proud of her. We've struggled through Lockdown and I feel like I've neglected her. This is my chance to try and make amends.

Feels like a roller-coaster (her favourite thing in the world after rhinos and pork pies) one minute I think I've got a grip on it, the next it feels like I'm free falling. I wish I was a better sleeper!

Thanks for checking in on me @brisr949 . I will be just fine
 
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