Newly diagnosed 12 year old

[Brigittebidet]

Thanks to those on the “chat” topic who pointed me in the direction of this board. We’re away on holiday but DS was peeing, drinking, tired and very acid breath so I took him to an a and e. Stupidly as I should have driven back home! Anyway we are now away from home, holiday rental runs out on Friday and it all feels a bit overwhelming.

I also have no idea how to deal with helping a nearly teen deal with this. He’s very perky at the moment and quite “happy” (despite no sleep) but I imagine this will get old very quickly.

I'm the carer for an adult with a brain injury who is an insulin dependant diabetic and honestly you just get used to it. It becomes second nature after a while and you begin to learn the ropes. Try and just take it one meal at a time for now. Ensure you have something in stock for hypos and gradually you will find your feet.

Hey @Brigittebidet my 13 year old DS was diagnosed in May, like you it was a bit of a shock (understatement)! It is very overwhelming to begin with, especially all the 'lessons' you're given on carb counting, insulin, glucose levels and so on, but romdowa is right: it does very quickly become second nature.

My message to my DS was that his life wasn't over; he'd get to have the same life, it'd just need a bit more planning in future. And that's proven true: we eat out (he LOVES eating out!), we've just had a bonkers activity holiday with sea kayaking, SUP and coasteering, he hangs out with his mates, he was back at school within a week. Yes, he doesn't snack between meals now and yes we have to manage his glucose levels, but honestly? His life is not that much different to how it was before.

I'd really recommend a Freestyle Libre 2 glucose monitor - DS wears it on his arm, it connects to his phone, and it sends continuous readings to him, me and his dad, and the hospital. No more fingerpick tests! But makes managing glucose levels 10,000 times easier. You may need to push for your DS to get one but really - do it.

The LIFT glucose drinks and tablets are super handy for treating hypos on the go. But equally x3 jelly babies do the job and are a lot easier to get hold of.

Carb counting gets easier with time. Download the 'carbs & cals' app as it's really helpful.

Get on the waiting list for an insulin pump. One of my oldest friends is type 1 and he said the pump really is a game-changer. Waiting lists are around 6 months where we are.

My GP wasn't very helpful to begin with when it came to repeat prescriptions. This is quite common, as diabetic 'kit' is expensive, and they want you to order every few days for some reason. I made myself a massive pain in the arse until they agreed that I could order all of my DS's prescriptions once a month. This makes it much, much easier to manage (for me).

It IS doable. You will get through it. There's loads of support out there.

Hope you’re home now and this has given you a lift.
Consider an insulin pump with continuous glucose monitoring - in our authority children are started on these very quickly. It’s more of a fight in other areas. My ds eats what he wants, when he wants and just puts the insulin in. As a student, that’s often! He can also change his background insulin if he’s going to be extra energetic. These new generation pumps even correct the background, so overnight at least (b/c he’s not eating!) he is frequently in range and steady. This quickly took away any night testing, which we did often when he was on injections or when he was on a pump without cgm.

Basically, it is probably overwhelming right now, but it will be ok and as butterflies said, he will be able to do what he wants to do, it just takes a little more planning.

@Bimblesalong we can't wait to get the pump - sounds like it's made such a difference to your DS! Good to hear positive stories. My DS goes low in the early hours of the night (despite tweaking his long-acting insulin), so am hopeful this will help even that out a bit. Waiting lists here are a bit longer due to covid, but hopefully not too much longer now. The CGM has made a huge difference: they fitted him with one 3 days after being discharged, which was amazing.

@eyeslikebutterfliesmy ds is on a medtronic pump which auto adapts the basals. Not only does it adapt to help head off highs and lows, it actually learns his patterns of need throughout the day and night and sets the basals itself. After years of working it out, first on injections, then pump without CGM, then pump and separate CGM we are finally integrated. The tech is getting better all the time. Friends have children on dexcom with t-slim and are running a closed loop. Unreal!

These things will soon become familiar. For now, you’re getting your boy well again @Brigittebidet I hope you’re getting some rest too xx

Thank you so much for the words of encouragement. We’re back in our home hospital now and they are talking about discharging tonight which neither DS nor we are comfortable with so I think we will try and do one more night if they’ll have us. We’ve seen the dietician but not the diabetes nurse yet so we have very limited info.

If you are on Facebook I would join the uk parent support groups. They are a lifeline, nothing quite like talking to others going through the same. You will have many questions in the coming days, weeks. Overwhelming at the start, and emotional for all of you - take one day at a time, it will be ok x

@Brigittebidet glad you're closer to home! You deffo need to see the diabetes nurse as presumably they will be your go-to once you're discharged? Have they given you phone numbers for out of hours support from the diabetes team? We have used ours a few times, it has to be said, especially when we thought we'd broken his basal insulin pen on the first night (we hadn't, I was panicking!).

We also had a LOT of information from the diabetic team while we were in hospital: we had 'lessons' every day from the consultant, diabetic nurses and x2 sessions with the dieticians. If you feel like there's stuff you don't know, then it's OK to put your foot down and wait until you have that info. There's an awful lot to take on board while in hospital (or it felt that way to me).

Three things you may find helpful:

1. Rather than think big scary picture, I treated everything as a little hurdle: focused on the first one, got over it, then on the next. E.g. get home was hurdle 1. Sort out all the prescriptions and kit was hurdle 2. Basal injection hurdle 3. First meal cooked at home hurdle 4 etc etc. I still do that to an extent now but there are less and less hurdles.

2. You'd really have to go some to get it wrong / make your son ill. My DS has lad lots of hypo and hyper sessions, all mild, he forgot to take insulin one time, we miscalculated the carbs another. While we work really hard to keep his glucose levels stable, the mistakes we have made have been easily sort-out-able. I didn't think that was the case when I was in hospital with him (I thought he die if we got it even slightly wrong!).

3. For us, diabetes care is just about checks and balances. A little more insulin here, a little less there, a bit more exercise here, a no you can't have that can of coke there. It sounds like from @Bimblesalong's hugely encouraging post about insulin pumps that a lot of that - in future, for my DS and for yours - will be managed by the pumps. The nurses at the hospital just kept saying: the technology is getting better day by day, and will transform our kids' lives. Something to hang on to.

Thanks all - at the risk of repeating what I have said on the other post he has just had a massive howl about the “forever ness” of it. He is exhausted in every way at the moment and has had so much information thrown at him that it had overwhelmed him.

We’re heading home tomorrow with much trepidation on my part. I think we might get a “meal deal” lunch and then at least the first calculations are easy.

@eyeslikebutterflies - thank you - those pointers are really helpful.

@Brigittebidet all the best with the return home. Hopefully you’ve got support in place from the dsn whilst you all get to grips with it.
Yes, it’ll take time for you all to reset, it’s a big change.

I’m sure you’ll let school know before he returns and the dsn will help with a care plan. My lad tested bloods and had glucose/carbs in his seat - don’t accept otherwise for hypos. Happy to talk school stuff when the need arises.
I would also second joining the Facebook groups mentioned on the other post. It’s a family you never wanted to join but is so supportive. CWD in particular was a godsend to us when ds was dx’d.