To feel completely overwhelmed and 100% confident I can not keep her safe

[Qb2654]

Very newly diagnosed 11 year old with T1D, after a very traumatic diagnosis last week.

I am so overwhelmed. Her blood sugars are running continuously high. Hit 22 at 9pm, 26 at 11pm. Ketones all clear. When it was 22 it was the fourth time today they went above 22.

I have done so much training and learning, yet I appear to have no idea at all what I am doing. I cant handle the hugeness of needing to count and figure doses for every meal or snack. Her insulin seems to take 3 hours to show an affect, so I'm scared to stack insulin.

AIBU to say I cannot do this?

She’s 11. She’ll also learn quickly to manage it herself. Hard but true. I’ve known a few T1D kids via sports I'm
involved with. Be kind to yourself and take it easy. You can do this

I can't help you but didn't want to read this and leave, so hopefully this bumps you up and someone with experience will see it. In the meantime, are there any charities that can help you?

Can you get some sort of closed loop system?

Hello

you poor thing! I remember this well! My seven year old was diagnosed at 5 and it was absolutely earth shattering for us as a family at the time.
one day she was a normal kid the next we were like nurses having to finger prick and work stuff out is was absolutely awful for us all.
basically I felt exactly the same as you.
I was a wreck, didn’t know what I was doing and didn’t think id ever be able to do what she needed. I will say the first two weeks are hard so right now you’re not going to know your arse from your elbow and that is normal.
also she will be high for a while, we couldnt get my daughters levels down for about a month I kept thinking the insulin wasn’t working. It will come down. Her body has had no insulin for years remember. What made me feel better was that even if her body isn’t doing what you were expecting she has the medicine in her which is what her body needs so she is better than she was weeks/ months/ years ago.
has your diabetes team given you an out of hours number to ring when you are worried?
I rang mine every day and night for weeks!
feel free to PM I have been where you are and it does get better.
also once your child gets access to an insulin pump and sensor it will be much much easier, right now your in the thick of it I promise it gets easier it just takes time.
sending you lots of love

It is a huge change for the family, I doubt there is anyone who would not be feeling overwhelmed and upset by the diagnosis, the fears of making a mistake, the stakes are huge.

Wishing you and DD the very best of luck. Look into joining online family support groups to feel less alone.

Also my DD is now seven and a happy little girl, I never thought we would get here and I’m not as unhinged as I was when she was diagnosed!

You are not unreasonable to feel scared and overwhelmed OP…but you can (and MUST!!) do this! Because…what is the alternative? You’ll learn, with support, and so will your daughter. My 9 year old granddaughter now manages hers - my daughter felt equally as overwhelmed as you 3 years ago, as did we all, but now it’s second nature to everyone.

You will get this 👌🏻💪

This is the hardest bit. It is all so new. It will start to become your normal (even if it's a tough normal)

I used to care for someone with T1D, So long as the keytones were less than 0.9 the medical/clinical staff were not too concerned if the blood sugars were high. It will take time and adjustment with insulin to get the balance right. Are you getting good support from specialist team? Does your daughter have a libre meter ( or similar ) fitted ,so you can scan her levels and which sounds alarms when sugars exceed or fall below set ranges? I promise this will get easier, you will gain confidence and it will become part of normal life. It is all new to you right now, no wonder you are feeling overwhelmed. What I used to say to the person I cared for was that treatments are getting better all the time and your daughter is still so young and there will be even better care and management in the future.

Morning bump.

My half-brother was diagnosed with T1D at 9. It was a very traumatic event as it was diagnosed in A&E. My ex has T1D too.

It's a steep learning curve but you will absolutely get better at managing it, I promise. What is overwhelming now will become less scary and you will make huge leaps in your learning, and you'll start building up a big knowledge bank about what's working and how to respond. Take full advantage of support groups and nurse helplines, because new diagnoses can feel lonely and they'll also offer you reassurance that you're on the right track.

You will probably also start noticing how many people have T1D. At a swimming pool on holiday, I saw 3 people with sensors and I witnessed two young guys noticing the other had a sensor and they high-fived each other.

You definitely can do it and it definitely will become a normal part of life that needs management rather than the terrifying thing it is in the initial months after diagnosis. Good luck x

How are you doing today? If they are that high, first thing to do is double check with a finger prick (assuming you’re getting the 22+ from a Dexcom/libre?)
Then look at the insulin delivery. Is this via pump or pen?
pump- change it if it’s not coming down within 3 hrs.
pen- make sure you’ve not mixed up and given her the background Insulin ‘basal’ instead of fast acting ‘bolus’
There is a lot to learn but I promise you you’ll get there and it does become second nature.
At first it can be easier to keep to similar meals with a low ish carb count just so you can work out her ratios - see what works etc

Thank you. Today has been incredibly difficult. I should add she has quite significant additional needs and is in a specialist school provision. I think today has been an absolute clash of Trauma of all of this, her other additional needs and her new reality sinking in, even though it's only early days.

She went so high earlier today that the sensor stopped reading. She doesn't understand why we need to finger prick now she has a sensor so it was an awful meltdown to grt the finger prick. Then she was so high on the finger prick that also couldn't get a reading. She has no ketones though, which I measured at the same time as the finger prick.

She doesn't understand the nuances that the team have told her she can eat normally but with insulin, but why I may say no to a slice of cake when she's currently unmeasurable and every carb sends her sky high. She had 50g of cereal this morning and it sent her off the charts.

The insulin doesn't seem to set in until about 3 hours later, I don't know if that is normal?

She has clinic Monday, while she has no Ketones I'm trying to give her a couple of hospital free days. She's been in hospital since Thursdsy last week. The whole thing was traumatic. She was in severe DKA in ICU in Orlando Florida, where she was diagnosed. We had to get her in a safe position to travel and lots had to be redone when we got home. She was on our local ward within 4 hours of landing.

I know it seems absolutely terrifying right now but you will get used to it and it will become your normal

It’s overwhelming especially given you were away when it all happened. You can do it but you also need to make sure you’re getting the right support for you. Contact charities that can help support you all, look for Facebook groups.

if she is struggling ask the hospital about play therapy. Our hospital has a specific team for young people with autism and learning difficulties who are fantastic so see if anything like that is available in your area

Oh this is so tough especially if she has additional needs.
Lots of Carbs even with insulin do seem to be more difficult to manage. I look after a little boy at school with T1D and often when he has a simple carb (white bread, crisps etc) heavy packed lunch his levels are higher in the afternoon whereas when he’s had more protein and complex carbs his levels are more stable. Can you try getting her to eat more proteins? Cereal is all carbs so even with insulin it’ll more difficult to process.
Also it’ll take a while for things to settle down as her body has been running on little insulin for a while.

No its not normal for her insulin to start working 3 hrs post delivery.
At 3hrs it’s usually well on its way out of your system. It depends on the insulin but should start working at 20/30 mins after administering.
pump or pen?
I know how hard it was for me to come to terms with diagnosed @ 45 so I really appreciate how tough things are at the moment especially due to your dd’s special needs.
Write a list of Q’s for tomorrow’s appointment- I dont know where you are but we have a local what’s app group for people/parents with T1. See if yours has something similar? Hospital may be aware although it’s run by volunteers as a local branch of diabetes uk so not official as such but very supportive and non judgmental safe space.

I voted YABU but not because I am unsympathetic but because you can do this and you will. Just take each day at a time and you will get through it.

Incidentally I had gestational diabetes with one of my kids, which I know is not the same, but I absolutely could not tolerate cereal or porridge on any level and breakfast was almost always the worst meal of the day. I found a really good way to eat, which was basically high fat/
low sugar and a bit low carb but also involved food pairing (so if you did have carbs you’d have them with something high fat) which worked wonders for my readings. I know it’s probably different for your DD but I would recommend looking at something like this (and, possibly, taking NHS advice on diet with a pinch of salt in some cases).