In hospital with newly (today!) diagnosed DD

[TweezerMay]

It’s the middle of the night and I’m on the standard camp bed in a stifling room on a children’s ward, and I’m so scared. I’d be grateful for any firm shoulder pats or words of wisdom.

DD, 8, woke up with an awful stomach ache in the night. Combined with the fact she’d been drinking more than usual (I’d putting it down to the fact it’s been hot, and shes off school so I’ve noticed her drinking) I managed to get an in-person GP appointment, who did a glucose and urine test and sent us straight to the hospital.

Shes had several more finger pricks since, and two shots of insulin (not together - one before she could have some tea, one before ‘bedtime’ - a long acting one). She is not taking the finger pricks well at all, I had to have her in my lap and there were lots of tears from both of us and shes been begging me to take her home. I want nothing more in the world.

I haven’t slept in a long time and so everything seems a lot more dramatic than it probably would seem normally, but fuck me. What happens? Am I going to have to fight her to get blood every day until she leaves home? How does this work?

Apparently we’ve got the diabetes team coming to see us tomorrow but that might not happen because we might have to move hospitals (a complication of living on the border of two different towns). Can I say no, I want her to stay here? It’s the nearest hospital and she’ll get all unsettled again. I feel like I don’t know anything about anything.

Thanks for reading all that.

Oh OP, this was me four years ago and I didn't want to read and run. I'm sorry you're both having to deal with this. The diagnosis and the hospitalization bits are miserable but it will get better. I know it's not a new normal you want but you will all adjust and life will be different, but just as good as before, it just takes time.

My eldest was 2 when he was diagnosed and he loathed finger pricks - he's 6 now and barely flinched and doesn't even complain now when we do them. They get used to it. I'd encourage you to ask about continual glucose monitor (CGM) options (we have the Dexcom g6) - it's been invaluable to us. It's a sensor you change every ten days and between sensor changes there aren't any finger pricks - the CGM can stream her glucose readings straight to your phone. We also started our son on an insulin pump as soon as we could and that was life changing for him and us - he now only has like three shots a year if the pump fails for whatever reason, and we only have to do a site change every 3 days. It also calculates the insulin dosage so you just have to input the carbs. Carb counting feels like a massive hassle to begin with but in no time you'll be able to eyeball a muffin and guess how many carbs are in it.

The first few months are hard. Really hard. But I promise although the T1 doesn't necessarily get easier, your ability to manage it will. Life will get back to being happy again, you just have to get through the learning curve. For both of you. But you won't have to fight her forever - she really will adjust. I still have a good cry sometimes, sometimes with DS, but mostly life is as it always was.

I wrote a blog about our experience of the early years in case it would help you to read about others who've experienced it - just Google "The Diabeat" if you want to find it. There are also several awesome FB groups and podcasts you can use for support if/when you're ready and want them.

Sending you a huge unmumsnetty hug and happy to answer any questions you have if you'd find that useful. I remember the feeling of just wanting to break out of hospital with our boy and run away so well, but it will be okay. Make sure you're taking care of yourself too

Thank you so much @octoberfarm I’m just lying here looking at her, fast asleep and I’m so sad that I know she’s going to be woken up in a couple of hours and will be in hysterics about having her finger done again, and again I’ll want to take her home and I can’t. I’ll read your post again when I’m not so bleary to take it all in, but in the meantime thanks a lot for taking the time to reply.

I can't help but just wanted to say what a fantastic post from Octoberfarm! Good luck with your dd, I know it must all be dreadfully overwhelming but I'm sure it will get easier over time. Hugs from me too.

Diabetic children (and adults) in the family here and couldn't have offered better advice than @octoberfarm
Sending lots of shoulder pats and sympathy your way. It's a big shock and can be very overwhelming but you will all adjust and things will become easier, x

Your daughter is facing a life changing diagnosis. It's going to be hard but you and she will adjust.
My local paediatric diabetes team are amazing and I hope that whoever she ends up being under is too.
The good news is that she can and will be looked after. She will be provided with treatment that will help live an almost normal life.

This is from the NICE guidelines:
1.2.1Offer children and young people with type 1 diabetes and their families or carers a continuing programme of education from diagnosis. Include the following core topics
You and she are at the start of the process but it's been picked up quickly (which is excellent and how things should work).

Diabetes UK is also an excellent resource and are able to provide support:

www.diabetes.org.uk/guide-to-diabetes/your-child-and-diabetes/first-reactions-child

Hope that it gets easier very soon. It's a tough thing to go through but you and her will get the care you and her need.

But don't be afraid to be a squeaky wheel. You are her advocate. And reach out to family and friends to support you too.

💐

Hi OP. Totally feel for you. My eldest is T1D, diagnosed aged 2, almost 2 years ago.
I 100% echo everything @octoberfarm has said. It gets so much easier as time goes on and you’ll pick up lots of little helpful tips along your journey.
I have no doubt you will be incredibly well supported by the paediatric diabetic team who will be able to guide you and your daughter. Ours put on several family events throughout the year, so we can chat to other families and the children can meet others in the same boat.
The technology and support that is available is genuinely phenomenal - if I stop and think about it too long I get very emotional.
Best of luck to you and your daughter!

I echo what @octoberfarm has said, we are many years down the line now,
as scary as it is at first you both will adapt and she will get used to the finger pricks and the injections
longer term once settled I would definitely recommend a insulin pump and a CGM it’s given my son a whole lease of life and so much more freedom with eating and snacking,

he’s just walked in a hour ago from a 2 week backpacking trip.

Best of luck to you both
also ensure that school is on board and training given straight away in September so her routine is as normal as possible for her.

OP

You have had good advice already, I was going to mention flash or CGM monitors, you still need the occasional finger prick.

I got a diagnosis of type 2 in May and finger pricking isn't fun and I'm mid 50s.

Ask them the setting on the lancet (the finger pricker) on a child it should be the minimum, you dial it up for thick skin. See if she can do it herself and also ask if they can use 'alternate site' pricking.

jdrf.org.uk/information-support/treatments-technologies/flash-glucose-sensing/can-i-get-libre-on-the-nhs/

Finger pricks are horrible and I don't have diabetes.

Ask them to do it in the side of the third and fourth finger not the tip of the index finger as that hurts for ages. (Appreciate with so many it might not be an option)

Wishing you and DD strength for the next few days

Hi OP, I just wanted to say I'm sorry you're having a tough time. I know what it's like because it just happened to us when DD 10 was diagnosed. We got home on Monday. Please feel free to pm me if I can give you any moral support.
What finger pricker are they using? The yellow/ orange ones in our hospital were quite vicious. You want to try one of these if you can get them to bring you one:
Accu Chek Fastclix Finger Pricked Lancing Device + 6 Lancets amzn.eu/d/3yeO7N8
A nice nurse brought us one in the middle of the night.
Although we're back home I'm still feeling overwhelmed with it, not helped by still feeling really tired.
💜

In due course they should help you get set up with a CGM or flash glucose monitoring (brands include Dexcom and Freestyle Libre if you want to have a google) so you aren’t endlessly finger pricking. I’m an adult T1D now (many years after being diagnosed in early teens) and it’s really ok. Annoying, occasionally disruptive, but hasn’t stopped me ever doing anything (inc having three kids and a huge job). As “shitty dice rolls” go, there are much worse ones. I still remember the worry and weirdness of the early weeks - you will soon feel like an expert and be doling out advice to newbies! Good luck to you and your daughter.

It’s an awful shock isn’t it.

Firstly I agree with getting a Multiclix fingerpricker, 6 needles in a barrel.

Longer term, or, ASAP, ask about CGM - a Freestyle Libre 2 is what we started with, applied once and lasts a fortnight, scan whenever with a smartphone. We’ve since gone onto a glucose pump and a Guardian 4 sensor, which talks to the pump, much better control and less injections etc.

Good luck. Remember the paediatric diabetic nurses are experts and our local team are very approachable and helpful.

Thank you everyone, honestly, from the bottom of my heart, for taking the time to reply to me. I was in a very bad place when I posted that message and it really helped me to have people spend time answering.

Since I posted, we’ve been through a total whirlwind. DD is taking it all in her stride and has more than once made me cry with her strength and maturity. She’s probably looked after me more than I’ve looked after her!

We’re working on settling into a four times daily insulin routine. The first few days were hell with physical restraining making everything fucking hell on earth. She kept apologising to us and that breaks my heart too. Then yesterday morning she just flipped a switch inside her head and just relaxed and let us do the injections. It’s made a world of difference to everything (although I’m aware it may not last). We’ll hopefully be discharged tomorrow.

Theres so much to get our heads around, but thanks again for getting me through that first night.

I'm so, so glad that you're both doing a little better - it's such a huge and terrifying shock but your DD sounds amazing, and it sounds like you're heading in very much the right direction. Kids are incredible. Wishing you both all the best, and hope you get to go home soon ❤️

I'm also glad to hear things are improving. It must have been such a shock.

Is she too old for a teddy?

jdrf.org.uk/information-support/newly-diagnosed/information-packs-and-leaflets/kidsac-pack-children-type-1-diabetes/

There are some great support groups on social media - Facebook particularly. Great for asking questions and learning. And just general support. In time maybe link locally and meet other families, that helps with not feeling alone - for both yourself and your daughter. Day at a time x