Morning All!

[Eco Worrier Dad]

Hi, I'm Oz,

I'm father to a 12yo boy with newly diagnosed T1D (10 days). I worked for 10 years as a Nurse, and my wife qualified as a Dr but never practiced so we feel like we ought to know all about this. But in reality we really don't.

Mainly here for support and to be part of a community of people who "get it".

Thanks in advance.

Oz

 

[rebrascora]

Hi Oz and welcome.

Sorry to hear of your young chap's diagnosis. Not easy at any age but must be particularly difficult at that age when you are old enough to remember rife before and on the cusp of adolescence when life become more difficult anyway without having the extra baggage of diabetes. And even harder for parents I think! Sending (((HUGS))) to you all.
Diabetes is very complicated and individual so it doesn't matter how much you do or don't know, you have to learn how it works with your son and only time and experience will teach you that..... and then just when you think you have it cracked... the goal posts move and you have to figure out new strategies. It keeps you on your toes mentally, but it definitely does get easier with practice and despite the scary moments when you make silly mistakes and we all do, on the whole it is mostly pretty manageable once you get into a routine with it. We often liken it to learning to drive.... The first time you get in a car you have to think about every single part of the process, but gradually as you get more experience you automatically look in the mirror and your hand goes to the indicator without telling it to and you change gear without groping for the gear stick and trying to figure out which gear you are in and where the next one is.... it all just happens without conscious thought..... and then you are just looking out for the road signs to find where you need to go or the kid on a bike up in front who doesn't look like he is very stable or if the traffic lights are going to change before you get to them..... Anyway, you hopefully know what I mean. It is very tough in the first few months particularly, but after the first year or so it gets easier.

How is your son coping? Is he managing to do his own injections and testing?

Which insulins has he been given and how are you managing with them?

I hope/assume he has Libre sensors or some other CGM which should make things a bit easier than relying on finger pricks?

Is there anything that you are finding particularly difficult? If so, feel free to ask about it. We have centuries of lived experience here on the forum so there will usually be at least one person who has had similar problems and figured out a solution and we have a few experienced parents who pop in frequently to offer tips and support to new parents.

The important thing to remember is that perfection is impossible so if you are doing the best you can and it still goes wrong, don't beat yourself up. Diabetes is fickle and doesn't play by the rules a lot of the time. Sometimes you just have to shrug and hope that tomorrow will be better... and usually it is.

 

[trophywench]

Buy yourselves a book written specially for you!

Type 1 Diabetes in Children, Adolescents and Young Adults: Amazon.co.uk: Hanas, Dr Ragnar: 9781859599891: Books

Buy Type 1 Diabetes in Children, Adolescents and Young Adults 8 by Hanas, Dr Ragnar (ISBN: 9781859599891) from Amazon's Book Store. Everyday low prices and free delivery on eligible orders.

www.amazon.co.uk

 

[everydayupsanddowns]

Buy yourselves a book written specially for you!

Type 1 Diabetes in Children, Adolescents and Young Adults: Amazon.co.uk: Hanas, Dr Ragnar: 9781859599891: Books

Buy Type 1 Diabetes in Children, Adolescents and Young Adults 8 by Hanas, Dr Ragnar (ISBN: 9781859599891) from Amazon's Book Store. Everyday low prices and free delivery on eligible orders.

www.amazon.co.uk

Haha!

Just what I was going to suggest.

Welcome to the forum @Eco Worrier Dad

I’ll also tag in some of our parent posters @Bronco Billy @Thebearcametoo @Sally71 @stephknits who might be able to share their experiences

 

[Thebearcametoo]

Hi and welcome. I have a 12yo too.

Professional knowledge will help you a lot but being a patient or carer is a whole other headspace than being a medic. It’s ok not to always have the answers and to lean on your diabetes team. There’s a huge learning curve at the beginning but you will be well supported. Management is a lot easier with all the available tech but it’s also fine to be doing finger pricks and injections. You’ll end up needing to know how to do both the ‘basics’ and pumps and CGMs. My main advice is that it’s a marathon not a sprint and having ‘good enough’ management that makes life easier and is probably a better goal than aiming for perfection - especially as diabetes doesn’t always play by the rules so perfection is impossible.

We’re here to answer questions and to support you through the emotional rollercoasters.

 

[Eco Worrier Dad]

Thank you all for the support, and the book recommendation, I'll definitely get a copy.

We're still finding our feet at the moment, obviously we'll settle into a new way of life soon enough, but we're definitely not there just yet.

He's managing his own injections, sometimes with a little help from us if he's running out of sites he can reach himself, and he's got finger-prick tests down to a fine art already. In reality he's been amazingly brave and matter of fact about it. We've had a few emotional moments, but mainly due to tiredness after 4 days in hospital with very little sleep.

So anyway, he's on Novorapid before food, and Levermir once a day, originally the Levemir was at night before bed, but after a complete disaster where we managed to inject 12 units of slow acting before breakfast instead of the rapid that's now in the mornings (don't ask). His ratio is still pretty fluid, we're chatting to the team at the hospital regularly and adjusting it in an attempt to get his levels stable before he heads back to school and the extra activity changes everything.

He's currently running pretty high which worries me from the perspective of a former A&E nurse, but I'm trying my best to look at things as a marathon and not a sprint.

We managed to get on a free trial for a Dexcon G6, so we're about 36 hours into that and it's proving great at showing us trends, but it isn't massively accurate for his actual levels. I'm told not to worry for the first 48 hours or so.

So much to learn...

 

[Thebearcametoo]

It’s not uncommon to bring levels down gradually as his body will have been used to running high and he can end up with false hypos if they bring it down too quickly. The aim is to be bring the average down in a manageable way. It will take a few weeks at least to gather data and settle on ratios. The G6 will be very helpful for that. Try not to watch it like a hawk. Trends over days or even weeks are useful. An individual reading doesn’t tell you a lot unless it’s about a hypo. And sensors tend to be less accurate out of target. You can calibrate them but there’s not a huge point at this stage in his diabetes journey.