Out of the blue diagnosis - 14 year old daughter-struggling

[TheClockworkDodo]

Hi everyone,

I am so thankful and grateful for all of your replies.

Phoebs is doing ok, a lot of adjustments to take in but hearing it is all quite common really helps; we are currently on set doses of 10,10,10 (Humalog) and 14 (Lantus) which we have been correcting but her sugars are still around 18/19 so this afternoon the diabetes nurse adjusted the insulin to 11,11,11 and 16, so hopefully that will settle. We have the added complication of going on holiday on Saturday to Kefalonia so have arranged for a repeat prescription which will hopefully be at the pharmacy on Wednesday and the team mentioned using ‘Libre’ which in theory could be fitted on Thursday at clinic, along with an iport as she has been struggling to inject (mainly from the fear) - she is much happier today although she is reluctant to snack in between meals although I know she is hungry so any advice is welcome...
As for me, I am flitting between fear and guilt - the guilt thinking if I should have realised and pushed for blood tests sooner or even contemplated type one (which I hadn’t) and the fear of the unknown which I suppose are quite normal, however am wondering if I will ever sleep soundly again?! (bit of a nightly pattern of sleeping, dreaming, going in to check if she is ok etc)
Anyway, had better head off to try and sleep! Thanks again, it is so comforting to know that help and support are out there.
Saffy x

Hello Saffy and a belated welcome to the forum. Sorry to hear about your daughter's diagnosis - I know how it feels to have the call to go straight to hospital - I spent a week there in DKA, though I imagine it was a lot less scary for me as I was 44 when I was diagnosed.

As your daughter's blood sugar was so very high they are probably bringing it down gradually, as that is safer - going from 37 straight down into normal range would not be very good for her, so getting down to 18/19 after a few days and increasing the insulin gradually is the safest thing.

As everyone has said, do take up the offer of the Libre, it would definitely be worth having one. The readings aren't always entirely reliable, so if in doubt do test as well, but overall it will mean fewer finger prick tests for your daughter, and will give you peace of mind because you can scan it in the night without waking her and make sure her blood sugar's at a sensible level. It has arrows so you can see whether her blood sugar's going up or down, and lots of other useful information.

If your daughter's scared of the needles it is possible to get covered ones, which might be an alternative to the iport in the longer term (I use them as I can't see needles going in without passing out so I've never done an injection with an uncovered one!). If she is reluctant to inject because they're hurting her rather than because she's scared of needles she may just need a different brand of needle (some of the cheaper ones are not as good, and also some are longer than others) or for a diabetes nurse to go through her injection technique with her again and make sure she's getting the needles into the right places.

Walnuts, pecans, and chunks of cheese are all good snacks for now, and if she wants a biscuit with the cheese TUC biscuits are only 2.7g carbs each. Once her blood sugar's down a bit further she could go slightly higher with the carbs for snacks - eg other nuts, or a lot of us eat a couple of squares of dark chocolate (85% cocoa or more) as that's pretty low carb. If she wants an ice cream on holiday she might be OK with that if it's a proper creamy gelato type and not a sugary/fruity one, but she might need a little extra insulin for it (I found I only needed half a unit for one scoop of mint choc chip with no cone, but I'm on quite a lot less insulin than she is).

Enjoy your holiday! - just make sure you take the contact details for the diabetes team so that you can get in touch with them if you need them, and we are always here if you need advice about anything. Do you have a Frio wallet or something similar to keep the insulin cool if it's hot?

 

[Northerner]

Just another couple of helpful things 🙂 If you are on Facebook there is an excellent group 'Parents of Children With Type 1 Diabetes In The UK', which may give you access to others who have been in your situation, and perhaps some children around your daughter's age in your area 🙂 Also, a useful free little book from Diabetes UK '100 things I wish I'd known about diabetes' containing words of wisdom from people living with diabetes of all types (including some contributions from forum members!) 🙂

 

[TheClockworkDodo]

I had a couple of other thoughts about your holiday, @Saffyd76 - you may have already been told these, but just in case -

You might want to get a letter from your GP or diabetes team to explain why you are carrying medical equipment through customs, if you still have time to organise this - you probably won't need it, but it's useful to have one just in case you get a jobsworth at the airport.

You can get a lanyard at the airport which (discreetly) alerts the airport staff you're travelling with someone with a medical condition. I'm not sure how you do this, but someone here will know, or you could search the forum for lanyard.

Make sure you keep all your daughter's medical supplies in hand luggage, partly so you don't risk losing anything, and partly because insulin can't go in the hold in case it freezes. Ideally take twice as much as you think she will need and split it between her hand luggage and yours. I don't know about Humalog, but if I remember rightly Lantus needs to be kept below 25c so if you don't have a Frio you'll need some other kind of cool wallet for the insulin (but don't put it next to an ice pack).

Take plenty of hypo treatments - jelly babies or dextrose tablets are ideal for travelling. I know her blood sugar's high at the moment, but the effect of being on holiday in the sun could easily send it plummeting. Be prepared for the unexpected! - extra exercise, eg swimming or walking, might send her blood sugar down rapidly, though lying on the beach all day might send it up. Excitement might send it up or down. Hot weather might send it up or down (it varies from person to person). So if it's doing unusual things, don't panic, just be ready with hypo treatments or extra insulin as needed. If she starts having hypos and you can't get in touch with the diabetes team immediately, I should drop her insulin doses first and talk to them second rather than waiting!

 

[Saffyd76]

Tgab

Don't blame yourself or beat yourself up @Saffyd76 - T1D is just one of those things. Nothing you could have done to prevent it, and you can't be aware of everything to spot every potential medical condition before the medics do.

Some parents find Libre and Miao Miao (or alternatives like Dexcom) helpful, with or without 'Nightscout' as these are ways of you getting alerted to changes in BG overnight in a different room (or even if your littlun is away at a sleepover or on some outward bound adventure). Early days for you guys yet... but just know htat there is nothing that you will face that others haven't been through already, and there may well be a hint / tip / strategy / or gadget to help you out.

Thanks so much for your kind reply x